TODAY'S DAILY LOG

 

June 10, 2021

 

4:30pm  Spagetti down the hatch and Erik brought him Drunken Noodles with shrimp.  The noodles are a third down and Nana has called a halt to eating to give the stomach a chance to make sure things stay down.

 

3:30pm  He's in an actual 'room'.  Has to lay flat until 6:30pm.  Can't even lift his head or he might start up bleeding from his groin.  He was punchured on both sides of the body.

 

2:30pm  Erik and Nana are with Seth in the recovery room.  He's getting hungrey.  

 

1pm  All done.  Seth is in recovery.  The dark spot they saw on the CT scan was part of the valve that was prolapsed.  And when they did the TEE scan from inside the esophagus showed the arteries they were concerned about far enough away, so no problem putting the new valve in.

 

 

9:20am  Erik got the call that all is good so far.

 

7:47am  Seth has his hand iv in and they have given him meds to relax him.  ---Not relaxed, out of it. And they are wheeling him back.

 

6:15am  Second, COVID test is done.  First one was done on Tuesday.  Now they will prep Seth while waiting until the results get back.  

 

6:00am  Seth and Nana are at the hospital.  Erik is on his way and as usual, contruction season has started.  More road blocks than he anticipated.

 

Seth stayed up until 10:30pm last night playing with his good (and Old) friend Oliver.  They have been friends since they were born 9 days apart.

 

 

 

June 8, 2021

 

7:30pm  Home.  This tech didn't get lucky.  Seth's left arm hid the vein just as the needle went in and after sliding the needle around looking for the vein, the tech gave up.  Success in the right arm.  Blood drawn.

 

7:00pm  Back in the hospital for Seth to give more blood.  This afternoon's tech didn't take enough to  cover all the labs.  She was good though in finding Seth's vein.  One stick and she got blood.

 

3:00pm  Nana took Seth to his pre-op today for his cath procedure to replace his pulmonary valves.  They found a black spot on the current valve and it might be an infection.  If so, he will need to do 6 weeks of iv antibiotice before the valves can be replaced.  So blood has been taken to grow the cultures to see if he does have an infection. 

The Dr. is new to Seth,  Dr. Vezmar.  He did an excellent job explaining to Seth and Nana the procedure for replacing the valves.  He showed them what the new valve will be.  Bovine this time.  Right now Seth has a porcine valve.  Seth is 5' 11" and 155#

 

 

 

 

December 16, 2020

 

We are now nearly 6 weeks out from Seth's incident, as I euphemistically call it. Today Seth went back in for another checkup with his cardiologist, and he is doing fine. He's now 5 ft 11 and 155 lb-- Within a half an inch of me ?

Only Nana can see that there are some residual issues, although he is still working on some of his physical therapy for balance and so on.

He is back in class, online of course, and keeping up with his course work. He had his incident the last week of the first quarter, and made the A honor roll, and with a Little help from Nana prompting (okay, let's be realistic Seth has a problem with staying on track, sometimes burning a whole day on a particular topic, instead of moving on to new classes, so the reminders are more frequent than other eighth graders might need.) Nevertheless, he is on track to be on the A honor roll this coming quarter as well. There are still some things around the edges that are not 100%, I think only those of us who are with him on a daily basis see these things.

 

 We are counting our blessings. 

And once again Nana Sara and I offer gratitude and reciprocal blessings for those who offered healing prayers and energy for his recovery and return to wholeness.???

 

If someone asks, I will post another Seth update. However, for the most part it is now the usual terrain of living with a teenager, sometimes smooth and sometimes bumpy, always worth the ride.?

 

November 24, 2020

 

Seth went to physical therapy.  He was tested for balance, eyes open and eyes shut.  He was given exercises to do and told to come back when weight restrictions were lifted and he would be assessed for other strengthening and chest opening exercises.

 

November 20, 2020

 

Sara writing:

Seth has finish a week of school and other than things going a bit slower than normal, he is doing just fine.  Yesterday, Thursday, he did taekwondo on the field where he had his heart arrest and did the full workout (all-be-it no pushups).  He got to meet the fireman who saved his life.  It was nice to see him back with his friends, working out.

 

He has this week off from school and his goal is to complete the homework he must and hopefully go back and do some of the assignments he is missing.  The school has given him a pass on the missing assignments as it was only 4 days, so he was able to stay on the A honor roll. 

 

Thursday was also check up day at the cardiologist and Seth is good to go.  He will have another one right before Christmas.  They are waiting for him to heal for a few more months before considering doing the CT scan at Abbott.  Tomorrow he has a physical therapy review to see if there is anything needed to get him back to ‘normal’.  At this point, I don’t think there will be any reason for him to do any sessions.

 

Thank you for all your words of encouragement and prayers.  They really helped during this difficult time.

 

May you have a wonderful Thanksgiving.

 

November 20, 2020

 

Peter writing:

Life is good, distant learning is hard and slow going.

 

Details;

Seth is doing amazingly well. It is taking him a bit longer to do his homework assignments --speed has seldom been one his attributes when it comes to school work and homework. Now that everyone is distant learning, the Google meets for every class hour help keep him on track. Luckily today, Friday, is a day off for him, so is next week for the Thanksgiving holiday. Good, he can play catch-up. 

 

Wednesday night we noticed mild bruising on the inside of his right arm, elbow to wrist. We did some checking, and sometimes bruising occurs after an IV is removed. However his Doctor, in a pre-planned appointment for Thursday, said he had not seen such bruising. We are keeping an eye on it. It does seem to be getting less rather than more. During this appointment Seth's new pacemaker was adjusted, and as Commander Data used to say, 'operating within normal parameters.'?

 

After his doctor appointment, Seth attended his taekwondo class. Through a bit of contact work, the first responder (first on the scene at Seth's "event" ) came in to the taekwondo soccer field (where this saga began two weeks and a day ago.) Sara expressed her profuse thanks in person. Seth did as well, but in a rather perfunctory and shy way that you might expect of a 14-year-old boy.

It was IMHO also helpful for the taekwondo class members, and Master Lee (the Lead teacher and owner) to see Seth up participating and moving around in such a splendid fashion.

 

Sara arrived home, and expressed for the first time a sense of great relief. But also of being emotionally drained from the experience of the past two weeks. (It is, indeed, head-spinning to have gone so far down, and recovered so far back up, in just two weeks and a day's time!) A feeling that she has been more or less kept hidden --as we often do during times of crisis. So I'm glad that she is expressing this, as I feel (I hope) it is a way to put that burden down -- or at least some of that process is beginning. Also, perhaps an acknowledgment that this crisis is nearly finished. Time to take a new, refreshing, restoring breath, look forward to the next breath, and look forward to tomorrow.

 

Thanks once again to and for the members of this group, every individual, as some super battery connected to each other, each offering prayers, healing energy, and visualizing this young man as healthy and whole 

-- may it be so

-- and so it is 

 

In Grace and gratitude,

Sara and Peter

 

 

November 19, 2020

 

A check up with Dr. Carter to make sure the leads are holding in place.  Everything looks good. 

 

 

November 15, 2020

 

Seth Update;

 

The outer bandages came off this evening. The pacemaker incision scar looks good --we are not surprised the area is mighty tender. Cognitively speaking, it's hard for us to tell -- it's that close to "normal." However, he submitted online two algebra assignments to 100% (automatically graded) and a science assignment. We know his wit and humor are back (see saved by the bell post, which he appreciated.) If playing on computer game counts, well he's got time and ambition for that. School was going to give him another week off -- he doesn't want that, too much makeup work in his estimation (showing welcome signs of maturity.) Tomorrow is a full day of distance learning, so his stamina, and ability to stay on task will be stressed. We've asked him to do what he is able, and he's game for that. 

 

We're still in a bit of a swoon, almost as if the last 10 days didn't happen. We'll take it -- we'll take it as it comes. 

 

Thanks seems not enough to express our gratitude, but thank you anyhow;-)

 

November 13, 2020

 

Seth is home and other than being sore in his left chest, he is doing well.  He is tired but in good spirits.  

In a week, he goes back to the Heart Clinic to check the new pacemaker.  In a month he will see neurology about the brain trauma.

On the good side of the brain trauma, he says he isn’t as foggy and he wants to try to do some schoolwork.  As he turns in assignments, we will get

a better idea as to what to say to neurology to help determine if he will need therapy or just time to heal.

 

One correction to what I earlier wrote.  Seth’s last nurse said that calling the episode that Seth had a heart attack was ok for layman but what he had was a cardiac arrest.  Here’s google’s description of the differences.

 

A heart attack is when blood flow to the heart is blocked, and sudden cardiac arrest is when the heart malfunctions and suddenly stops beating unexpectedly. A heart attack is a “circulation” problem and sudden cardiac arrest is an “electrical” problem.

 

Thanks again to each of you for your prayers and support.

 

 

November 13

 

❤️

Seth walks out of Children's Hospital under his own power. YEEE-HAAAA!!!

❤️

 

Thank you so much for the wonderful support, prayers, encouragement and of course the gift card. 

We truly appreciate all the help the night of Seth’s heart attack.  I (Sara) couldn’t have gotten through the emotional turmoil of the evening without your support.  Your encouragement and strength gave me the energy to drive to Children’s that night without breaking down. 

 

It is not Friday morning.  Seth is up and walking around.  We have the expectation that he will go home, but he needs a chest x-ray to verify that.

 

From the CT scan we know he has problems with the pulmonary valve which was inserted in 2012.  The valve is leaking.  In the near future, the discussion will be centered around if the valve can be replaced in the CT lab through the femoral artery or if he will need another open heart.

 

Physical therapy was here and he will need follow-up visits to make sure he is on track.

 

November 12, 2020

 

Seth is back in his room, recovering.  He has a new Medtronic ICD pacemaker.

 

The CT procedure started late as his blood pressure was low. 

They found the pulmonary  valve is leaking.  The artery that had stenosis is still narrow but not as much of a concern.  We have pictures of his heart.  We can see the wires around the sternum and the leads to the old pacemaker.

 

Dr. Carter came in to do the pacemaker.  The unit went in fine and the first lead found a good spot to be only to end up double counting so they had to find another spot.  The procedure took and extra hour and a half.  Dr. Carter joked that he jinked it by saying, he would be over in a short time.

 

Tomorrow, we will get a better idea of what the next step will be.  They want him to go to Abbott for the original CT scan.  There must be a difference in the machines and the pictures they can take.  They are going to leave the old pacemaker in for awhile.

 

He is resting comfortably, on morphine and a couple of other drips.  He has to lay flat for 3 hours. 

 

5:00 pm  From his room, Seth walks out as Dr Carter keeps a eye on his heart monitor to ensure that everything is normal as can be. As long as the Bluetooth device in his left hand is within 6 feet of the pacemaker it will transmit data that Dr Carter can see on his tablet.

 

Short walk, x-ray to show everything is in the right place (new pacemaker is located upper chest near his left shoulder now) -- good to go.

 

Lots more data, lots more analysis, "come back in a week and we will tell you more" so says the good doctor and team.

 

Having been IV'd, poked, prodded, lectured -- maybe Seth hasn't earned the right to be tired & crabby but he was. Upon his return home he promptly retired to his room to take a nap. ?

 

We definitely appreciate the prayers, healing energy, and attention Seth has received these past 10 days (and the same for those addressed to Sara and me.) And for those who feel so inspired and have time and energy to continue, don't stop now ???

 

Nevertheless, I will post if there's a substantial change. Otherwise, less posts.

 

Wednesday November 11, 2020

 

Was it at 5am? Seth and his nurse were having a chit chat. He's up, eating and smiling while doing schoolwork, which 24 hours ago he couldn't do.

Thanks for the prayers.

 

Tuesday November 10, 2020

 

Seth continues improvements.

New, pacemaker Thursday at 11:00 a.m. if there's continued improvement.

 

Details and stories

 

Yesterday during the spelling test 

Dr, 'spell World'

Seth "w-o-r-l-d

Dr, 'spell it backwards'

Seth " b-a-c-k-w-a-r-d-s"

 

Long pause Dr figures out that he didn't hear "it"

So Seth spelled backwards. 

Seth realizes he missed "it" (or not)

Dr. and Seth both LOL. Sweet.

 

BTW, this is a huge improvement as Seth is normally very sloppy spelling, taking after his Father and Grandfather.

 

However, even though he knew mathematical operations like addition subtraction multiplication division, he couldn't add two simple numbers, let alone multiply or divide.

 

Improvements continue, actually opened his computer, and started doing science homework. Also started listening to his English class audiobook.

 

On the nuts and bolts side, all of the maintenance IV tubes have been taken away. Some of the IVs are still there for medicines. However, he can now get up and walk around unencumbered by the electronics associated with the IV cart. It makes life so much nicer, for such simple things as going to the bathroom.

 

Seth is up and walking around; pretty stable moving.  At times, he is back to his ‘teenage’ disagreeable self.  While that is hard to deal with, it’s nice to see some normality and if I were in his position, I’m not sure if I could be nice to people all day.

 

Seth is scheduled for surgery on Thursday morning at 11.  The new pacemaker is an ICD.  We don’t know the manufacture yet so here is a link to general information.

 

https://familydoctor.org/cardioverter-defibrillator-a-treatment-for-arrhythmia/?adfree=true

 

This is a very general article but a nice way to understand what he is getting.

 

I (Peter) wasn't there today, but walking around allows the compression wraps to come off the calves -- they help prevent blood clots, but they are noisy. When squeezing the calves, not pleasant. I know I couldn't sleep with them.

 

We have drawn another excellent nurse, her specialty for the past 10 years is working with kids with head trauma. We are grateful for the compassionate, caring, knowledgeable, and tough as nails staff (when they need to be) to keep Seth on the healing path.

 

My plan is to update again on Thursday night after he comes out of surgery to implant the new pacemaker. I hope the news is good.

 

Thanks once again for your interest, your energy, your prayers, your hopes and wishes.

 

His home care team, Sara, Erik, Peter are breathing, and sleeping a lot better these nights.

 

Monday November 9, 2020

 

Today or Tuesday a game plan will be put into place.  Seth will have a new pacemaker put in in his left upper chest area in an artery.  They will do that in the cath lab.  He will have a CT to help determine what condition his heart is in.  There is concern about the right artery which feeds the right side of his heart.  This has been a concern since he had his first heart surgery.  There has been a discussion about leaving his other pacemaker in place as a backup.

 

Neurology will continue to evaluate him for brain issues. PT and OT will start their working retraining anything that isn’t quite right.  I am glad they will have a start because just going in for another procedure and more meds could cause problems.

 

Thank you all for your prayers, concerns and questions.  We are truly grateful for each and every one of you.

 

Sunday November 8, 2020

 

Erik spent the night with Seth.  Sara arrived about 10am.  Although breakfast stayed down, lunch did not.  In many respects an uneventful day.

 

Still sore, crabby, short-term memory returning a little at a time; sometimes very little.  After Erik left, for some time he couldn’t remember that Erik was even here.  Then a bit later he was able to remember.   It is hard to see a child who was on the A honor roll not know what he had for breakfast or remember that his father was taking care of him.

 

Peter arrived around 6pm so Sara could go home.

 

He ate some noodles, they stayed down, then 8:30pm a couple of pieces of veggie sushi (no raw meat for the time being).  They stayed down.  Then two more and after some time two more.  Progress.

 

While he tires easily, he spent quite a bit of tablet time this afternoon and evening---easily beating yesterday’s time.  Tomorrow I (Peter) will see if we can challenge him to do more active games.  The Doctors said not to push, so we’ll be gentle.

 

Hopefully more news on the ICD tomorrow.

 

 

Saturday November 7, 2020

 

Today started out on a huge upswing, 30 minutes of watching cartoons.  Yesterday, if we could make 5 minutes awake at a crack we thought we were doing good.

Speech pathology came in, he ate two strawberries, a little at a time and then a vanilla wafer. They are watching his swallowing pattern.  He answered questions using multiple words rather than single replies.  Good strength in hands and feet.  Still not much short term memory.

 

Alas, we got to see the wafer and strawberries fill up the barf bag, change the sheets etc.  It was a real setback, drained a lot of strength and off to teenage sleep land.

 

Adjusting medications, adding magnesium, Tylenol and finally late in the day adding anti-nausea meds as the throw-up routine continued.  We noticed multiple PVC events, especially when laying on the left side, not so much on the right.

 

7:30pm  He is sitting up, sipping beef broth and we are hoping it will stay down.  Erik will stay with him tonight.  They are---amazingly---playing a computer game on his tablet.  He says his timing is off on everything; we are not surprised.  Yet, it is a nice upward swing to finish off the day, to see him awake, interested and capacity return --- if ever so slowly.

 

Gratitude!

 

We here emphatically express our great gratitude to and for the combined immediate efforts the off-duty firefighter on the scene applying initial CPR, the Rogers Police department & the Roger's fire department, and first responders backfilling additional support.

In that MOMENT, one of those where MOMENTS, seconds, minutes COUNT toward LIFE and BRAIN saving you all did it!

 

Gratitude for the professionalism exhibited.

Gratitude for those who stepped forward with their professional training, attitude, and action

 

      you saved SETH GRIMM's life. 

Let me repeat that for emphasis

 

 YOU SAVED SETH GRIMM's LIFE 

 

Superlatives escape me, so we simply express our abundant GRATITUDE. 

Thank You THANK YOU, thank you 

 

 

Friday November 6, 2020

 

5am:  Finally have time to actually put the times in the log.  Seth was up last night about every hour and a half asking for water.  He can’t have anything by yet.  His PCO2 level is too high.  This is measured by drawing blood every 2 hours.  It is at 54 right now, down from 60 (when I started to pay attention) yesterday.  He needs to be at 40 and the flow of oxygen he is receiving needs to be reduced.  When he is awake he is asking, “Can I have some water?”  He is told no and why, promptly falls back to sleep.  In an hour and a half the routine starts again.  He doesn’t remember we told him no and why.  I can’t get him to take deep breaths.  I am assuming that the chest hurts and he was compressed very hard and for quite a while.  Amazing, there is no bruising on the chest.

 

X-ray has been here and gone.  Seth had another coughing round and emptied more of his stomach.  I am surprised that there is anything down there.  And another round of when can I have water.  Part of it is scary as I have just explained to him when he can have water and then 5 minutes later he is asking for some and doesn’t remember what I said. Part of it is, “Are we there yet?”

 

8:30am.  Trauma has been here.  She checked Seth’s neck and determined that he has sustained no injury.  He does have one spot on the left side of his cervical spine that hurts and they will monitor that.

Trauma neck collar is gone.

 

9:30am   He is down to 6 different meds being dripped into him.  Co2 level is still at 54.  Seth kept removing his breathing tube so they have tape it in place.

 

So far, Seth has had 3 great nurses, Sam, Mike and Bob.

 

Peter writing:

 

A deeper dive, for 24 hours he has been asking for water and, for a variety of reasons, could not have it. Minutes ago he got his first sample water. The doctor wants him to at least try to swallow some applesauce, just to show that he can do it. Good steps in the right direction. 

 

Simple sentences, little to no short term memory. Fortunately, with the number of meds he is on (see the eye chart in the second picture) expected at this time.

 

Still tired, he pushes himself up in bed, and is tired out. That he can do this simple movement on his own when asked, good.

 

Yesterday just swabbing his mouth, that little bit of water was enough to have him throw up. He's just consumed a good cup of water and is keeping it down. Again, towards the good. 

 

This morning the neck brace came off, the catheter came off, he's in his own pj's now. 

 

Still, he's here for 2 minutes, and then wants to sleep some more.

Again normal

 

And the hard news;

Many of the medications sedations are wearing off, good the faster gone, the less side effects. 

However, Seth is now just grasping, not fully understanding that he is here in the hospital, doesn't remember the helicopter ride, or the events preceding it (good and bad of course.) 

Seth really wants to go home! He's done with oxygen masks and ivs, and is frustrated, scared, angry, combative. So it is, this too shall pass. These intense expressions wear on all the caretakers, fortunately the staff here has been through this and is able to offer soothing words. 

 

Still, that awakening between 5 and 6 pm felt like 5 hours of tension filled angst.?Lots of arguing about using the portable potty chair.  He wants to use the bathroom but he has too many IVs which can’t be shut off.

 

And yet, after multiple back and forth to the potty chair, he peed, it looked like a gallon.

 

Tomorrow is another day!

 

More nuts and bolts;

The doctors would like him to continue the healing course over the weekend. On Monday, health conditions permitting, will determine when he gets his next pacemaker -- likely next week but tbd. Since his current pacemaker has good battery life left in it, it will likely just be turned off in place, or set to Pace the heart should the rhythm drop below 40 BPM, for instance. 

The new defibrillator pacemaker will be installed. At the same time the CT scan planned for yesterday, and an angiogram. So three procedures done for one sedation. Nice.

Leaving the old pacemaker and means one less incision. The new pacemaker is installed inside the upper chest, and the wires travel through the vein.

 

And now, more waiting. The wheels of time and healing continue. 

Thank you for your continued attention, prayers and those people doing so, remote Reiki. ?

 

A full third of the equipment that formed a protective horseshoe around Seth is gone.

 

This is a partial list of the meds he is on or has been on as of Friday night.  Not include are the regular body maintenance ivs.

 

Current:

Cefepime

Vancomych

 

Night of admission:

Sodium bicarb

Mag sulfate

Calcium chloride

Amino bolus

 

Drips:

Amiodarone

Fsmolol

Fentanyl

 

There are others that he was put on to regulate the heart beat. 

 

Thursday November 5^th

 

5am   There were people working on him all night.  Lights never dimmed and alarms never stopped.

 

X-ray, ultrasound, and ekg have been done.

Seth’s neurosurgeon ( Knee is how she said to pronounce her name.  Real one is too complicated) came in to tell us that the ekg on Seth’s brain show little to no damage.  Later Dr. Carter stopped by to say that the ultra sound of Seth’s heart show a slight improvement from last night.  Swabs of Seth’s mouth were done and he has 2 infections; one low level and one high, so now he is on antibiotics.

 

7:30am round by the drs. are done.  I (Sara) recognized Dr. Gremmels.

 

11:30am   Peter writing

He is rousing as I write this, with luck the breathing tube will come out this afternoon.

 

Meanwhile, back in the trenches as it were;

 

Seth is sleeping and stable, this afternoon doctors are reducing sleep meds to see if he wakes up on his own, that is, enough to respond to suggestions to move his hands, feet and so on. 

 

When I got here and said hello, his eyelids moved a bit, hard to tell if that's rem, or acknowledging my presence.

 

More echo cardiogram today. Ct scan put off to allow brain to keep healing.

Sara's having a good chat with one of the nurses.

 

Bp, temperature, respiration normal.

 

Seeing him intubated, wired, and IVs  brought tears to my eyes. I've settled, and could offer him a cheerful good morning. 

 

 Eeg is looking normal, good news, but still a "we'll see." More to come, but the Wake up call. We're cautiously optimistic.

 

He got an echocardiogram minutes ago.  Dr. Carter stopped in and said that it looked improved from yesterday evening.  I am often astounded at the healing potential of the body and we’re doing everything we know to encourage that healing and to assure him that healing is happening.

 

Looking ahead in less than two weeks (?) as Seth's condition improves, his old pacemaker will be removed, and a new pacemaker implanted. The good news here, while technically arduous, the sternum does not have to be split open, they will make an incision to remove the previous pacemaker, and an incision to install the new one.

The new pacemaker an ICD, which means in addition to all of the other pieces that the pacemaker provides, it has the ability to be a cardiac defibrillator should the need arise. Also, these latest models provide Bluetooth connectivity whenever the pacemaker is within 6 ft of the connectivity port which will likely be near his bedside in the future. This means that issues that are experienced during the day are immediately relayed to the hospital, doctors. Instead of, as in the current pacemaker, having to wait for a 6 month connection.

 

 

Afternoon---Sara writing:

 

Master Lee and his girlfriend (I apologize for not remembering her name.) stopped by with balloons and candy.  Seth hasn’t seen them yet even though they are in his room.  His neck brace prevents him from looking around and he isn’t awake enough to remember anything.

 

Afternoon:  Since the brain looks good they are reducing the medications that are keeping Seth sedated.  They want him to start waking up so they can remove the oxygen tubes.  In the meantime, they are removing the right femoral artery iv, the left arm iv and the ‘fast’ iv, (one that is ‘slammed’ into the shin bone).  When they came to take out the fast iv, it didn’t want to come out.  It was very stuck in the bone.  Breathing tube is out and he recognizes Erik, blinked his eyes, stuck out his tongue, squeezed both hands and wiggle both feet.  He knows his name, and the year.  He exhibits occasional PVCs (premature ventricle contraction---part of what got him in this situation) but we were told it’s ok.  Told the neck brace can come off.

 

Dr. Overman stopped in.  We teased each other.  Seth will get a new pacemaker that Dr. Carter will put in in the Cath lab.  So Dr. Overman, surgeon, won’t be involved.  Then I asked who would take out the old pacemaker and he realized he probably will be involved.  Nice to have a friendly, excellent surgeon in Seth’s corner.

 

Jocelyn came by. She was Seth nurse practitioner when Seth had his first major surgery at 3 years, 3 months.  And Seth’s main anesthesiologist, David Dassenko, came by.  He will try to be on the team when Seth gets his new pacemaker and the old one removed.  He has been Seth’s main anesthesiologist in every major surgery.

 

He got an echocardiogram minutes ago. Dr. Carter stopped in and said that it looked improved from yesterday evening. I am often astounded at the healing potential of the body and we're doing everything we know to encourage that healing and to assure him that healing is happening.  

 

Peter writing:

 

4:30pm  Big excitement. They came in and removed the breathing tube. He is breathing on his own!

We are trying to get Seth to breath deeply so he won’t have to have the tube put back in.  He is coughing and bringing up yesterday’s pizza. 

 

He recognized daddy, Erik, knew his name and said his own name, (in a surprise baritone voice ?) blinked his eyes open if only momentarily), stuck out his tongue, puffed out his cheeks, was able to squeeze each hand, and each foot as Doctor "Nee" asked. He knew the year, 20. But didn't tell use who's president (BTW I won't either?) 

He exhibits occasional PVCs premature ventricle contraction, but our nurse tells us this is okay.

A big 5 minutes!

Next step, they will likely take his neck brace off sometime tonight.

He's back into a relatively deep (restful, restorative, healing ?) sleep. 

We're pleased as can be. 

Still cautiously optimistic, with some data points for continual forward progress. ?

 

9:40pm.  We got Seth to take 2 deep breaths using a tool that measures how much he inhales.  About the only words he speaks is that he wants water but they won’t give him any until he isn’t nauseous and is more awake.  He was coherent enough to ask if he had COVID. He is sleeping again.  Got a 3^rd breath and back to sleep.

 

November 4, 2020 Wednesday

 

Around 5:30pm, Seth had a cross between an epileptic seizer, heart attack and a stroke in Rogers, MN.  He was at his taekwondo practice, kneeling, waiting to move to help with the next kicking routine.  He fell over flat on his face.  His instructor, Master Lee, ran to get Erik and me from my car.  We got to him, rolled him over and he was having trouble breathing.  We started shouting at him to breath. His back was arching, he was turning blue in his face, ears, fingers, toes.  One of the fathers there is a firefighter and he started compressions on Seth’s chest.  Some else monitored his pulse which was light and thready.  Some times that was the only way we knew Seth was still with us. More than once they check him to see if he was still breathing.  The firefighter started the compressions before 911 was called. By doing so he saved Seth’s life and saved Seth’s brain.  About 8 minutes after 911 was called the Roger Police showed up in what I thought was 4 squad cars, but I didn’t count.  Some day I will ask Officer Steve details from his side.  Then the ambulances which I believe came from Maple Grove showed up.  There were at least 4 people, including Erik, doing compression rotation on Seth while the police setup the defibrillator.   Seth was shocked 3 times and somewhere during that time he went without oxygen for between 3 and 5 minutes.  30 minutes later the helicopter came and those paramedics took over.

 

We were very lucky the kids were practicing on the school football field and the lights were on.  More than enough room for the squad cars, ambulance and helicopter. The helicopter paramedics had him stable enough to transport in about 20 minutes.  Off to Children’s Minneapolis emergency ward, then cardiac 4^th floor.  Some during all the excitement, we were told that there was a possibility that Seth is brain dead.  There were enough symptoms to back that observation up.

----Some of the details might not be in exact order as I stepped away to contact Children’s Heart clinic and arrange to have his doctors know as many details as I could deliver.  But I believe the details are there and that I missed many of other important one.

 

Erik went home to check on Orion, Seth’s younger brother, and make sure he was ok.  Erik stretched the truth telling Orion that Seth was ok and needed to have his pacemaker checked.  I drove to the hospital and Erik followed about 30 minutes later.  After Seth was arrived it took about 3 hours to get him stable enough for us to see him. 

 

Background.-----Seth has a pacemaker which paces all 4 chambers but mostly the ventricles.  He has a fluttering of the heart which is random as to when it will show up and how long it lasts.  He has about 6 per month lasting between 3 and 10 seconds.  He also has a rhythm that is something like, normal beat, normal beat, short beat, long beat, short beat.  The heart decided to have an extra short beat just as he was having a flutter which caused the heart to be confused.  The pacemaker tried get the heart to the normal rhythm but failed.  No fault of the pacemaker. That description is the best I can remember Dr. Carter explaining.  It might not be perfect but it gives you an idea that 2 things went wrong at the same time; unpredictable.  On the nuts and bolts side of things, Seth's pacemaker kept track of this event. We now know that a series of unfortunate events, caused Seth's heart to go into arrhythmia -- in layman's terms it would be called a heart attack.

 

Now Erik and I are at the hospital in a conference room waiting.  The nice, comfortable chairs, magazine and other creature comforts are gone due to COVID.  When Dr. Carter came in he explained what they were doing and that it would take 48 to 72 hours to know how bad the damage was to the brain.  He already knew that the heart had been damaged, how bad would also take a few days to determine.

Erik went home around 9:30pm.  It’s Orion’s birthday tomorrow and Erik and promised a birthday breakfast.  We are concerned about Orion’s mental state as he watch some of what Seth went through on the football field.  Luckily Isabel was able to come and take Orion home so he didn’t see everything.

 

Around 10pm a nurse came in a glued 15 leads onto Seth’s head for a eeg hook up to monitor him for seizures.  It took about a hour + to do.  He has 12 bags of fluid being pumped into him:  They are trying to control the normal body maintenance, help control heart functions, control his shivering, 2 different ones for infections in his lungs. I haven’t tried to learn what each meds name is.  Seth in on a ‘blanket’ which has cold water running in it.  That’s to keep his body temperature down for healing and to help control a possible fever.

 

The skyline of Minneapolis is pretty to watch so late at night. 

 

 

November 2, 2018

 

This morning, Seth had a new pacemaker put in by Dr. Overman.  The surgery took about ¾ of an hour.  It took longer to prep him for the surgery.  He came out of it well with no after effects of the anesthesia.  Four weeks of no bath or swimming and two weeks of restricted physical activity are his only limitations.

 

The new pacemaker is an  Azure XT DR.  The battery in it should last for 13.7 years.

 

Seth is now in 6^th grade and is 5ft 4 inches tall and 125 pounds.

August 13, 2014

Seth saw Dr. Sutton today. He is 50 inches and 53 pounds (back to pre-surgery weight). He heart rate was 100. That's great as the pacemaker kicks in if the rate is below 80. He had an ultrasound done. Dr. Sutton was pleased at how Seth's heart looks. The right ventricle is improving. The new valve and conduit looks good. The left atrium and left ventricle are 'normalizing'. The left ventricle had been enlarged. Upon listening to Seth's heart, he said it was quite, not unlike on old fashion washing machine. He suggested that in time Seth might be able to stop the enalapril. Next check-up will be before the end of the year.

August 4, 2014

Seth saw Dr. Sutton today. He is 52 pounds. That's up 3 pounds since he left the hospital. He has been eating 2 breakfasts, 2 lunches and 3 dinners for the last few days.
Dr. Sutton said that there was no water on the lungs. X-ray looks good and the leakage in the mitral valve is hard to hear, which is a good indicator that the repair was sucessful. Next check up is August 13th.

July 31, 2014
Day 7 after his valve repair open heart surgery.

SETH COMES HOME!
1:40 pm Seth danced his way out of the fourth floor. On his way, he was walking in circles and he tripped on a nurse's chair and fell! He put his elbows out to catch himself. You could almost hear the gasps from the staff. He got up, laughed and said well 'I protected my chest.' He was a bit calmer but not much. Off to home with Daddy.

11:00am Seth's nurse removed the last IV. Seth dressed and slowly got excited to leave.

9:30am Jocelyn Berbee came in to check him and discuss his 5 week discharge routine. Seth can have showers, as long as his back is to the water. The only new (old) medicine is lasix. The good news, taken only once a day.

9:00am Dr. Overman came in to check how the exit holes (located front and center at the lower rib cage) for the chest tubes are healing. Dr. Overman took the bandages off. Seth demanded new ones be put on;-) Because of his bleeding issues, Seth is afraid and wants wounds covered. Seth's echo cardiogram and X-rays look good, so they will not be putting a scope down his throat. (hurray!)

7:30 am Seth got his verbal release. Sara raced to the hospital with clothes only to find out, as usual, getting the news and actually walking out does not quickly follow.

July 30, 2014

11:30am Jocelyn Berbee came by to tell us that Seth's central IV line in his neck is coming out. Seth can go home in a few days if he continues to increase his walking and not throwing up.

8:30am A walk around the floor and back to bed to watch Power Rangers. Breakfast is staying down.

8:00am Two sausage patties and 1/2 slice of French toast gone.

7:20am Seth threw up lots of liquid. He is receiving medication to calm his stomach. The nurse said this was normal and would continue for a few more days.

7:15am Drs. rounded and didn't come in. Seth is doing well.

5:00am Alarms are going and x-ray is here. Seth is sleeping through all of it.

4:15am Seth awoke scared that the Venus Fly Traps were eating us. Reassuring him that it was the drugs didn't work but using our arms to wave them away did.

3:20am Seth is back to sleep.

3:00am Patches and leads have been changed. Seth woke enough to ask that he remove the patches himself. That was good for about 15 minutes. Then the alarms started again. A technician was called and the box was changed. That lasted for about 30 minutes and then alarms started again. Seth was put back on the wired system. Of course, we are both wide awake and Seth wanted to be read to again.

July 29, 2014

11:30pm The portable monitoring system started beeping. The patches were changed.

10:30pm Seth is ready to sleep as long as Nana stays in the bed too.

10:00pm Four Power Ranger shows and four walks, each one longer and Seth is ready to have Nana read to him.

6:30pm A bit of the pizza came up. After being cleaned up Seth was ready to eat the last piece. We convinced him that he should eat the fruit instead.

6:00pm 3/4 of the pizza is gone and most of the fruit. Only one piece of broccoli is gone which is a surprise as that is one of Seth's favorite foods.

i5:00pm An 8" pizza with all the toppings---even onions was ordered along with a fruit cup and broccoli.

4:30pm Sara arrived. Seth was still mad at Rick. Rick left and Seth calmed down.

4:00pm Seth is now on a portable telemetry monitoring system so walking is easier. Rick was able to get Seth to walk a bit and then Seth slept. When he awoke he had another drug induced paranoia. Seth accused Rick of taking his pillows while his head was still on the pillows. Rick called Sara.

12:30pm Sara left.

11:00am Great Grandmother Elizabeth and Bob came by for a visit.

10:30am Grandpa Rick arrived to help. Erik showed him around and told him the routine then left.

10:45 am Leah Zupancich came by and removed the wire that was in Seth's chest for a possible exterior pacemaker hook-up. He said that was painful and was wondering if there was a special bead for that procedure. He is also having an echo cardiogram done. (At some point between healing and medications the slight bigeminy beat is gone.)

9:30am Children's recently started a program called Beads of Courage. (So new that one nurse didn't know about it, those in the know are still figuring it out.) Children receive beads (Colored, star shaped, and one series spells their first name) as milestones for the procedures and hospital duration they have endured. ("Every Bead tells a story of hope, strength and courage." www.beadsofcourage.org) To name a few, Seth received beads for; Being in the hospital for over 100 days, a Nikeadoh bead, pacemaker bead (shaped like a lightning bolt!), birthday bead, echo cardiogram bead, three beads for ventilator support, and more to come.

9:00am Seth had a fairly good night. When he awakens, he recognizes Erik quicker.
The Dr.s have rounded and there is no change. Seth just needs to continue to heal and get stronger. Big challenge for today, walking in the hallway.

July 28, 2014

6:30 PM Fritz, Rain, Lulu, Sky, stopped by to check on Seth. Grandpa Grimm is now in the cities. Seth is still tiring fast so visits are short.

4:00 PM Dr. Overman stopped by and is pleased at his progress.

2:00 PM A little more assisted walking.

12:00 PM Little walking. Seth is now in the Albert W. Cherne room.

10:00 AM Seth is resting in daddy's arms after 30 sec of standing.

9:00am Dr. Burton came in to look at Seth's heart beat. He has a slight bigeminy beat. (Bigeminy (Latin: bi-two, gemini-twins) is a descriptor for a heart arrhythmia in which there is a continuous alternation of long and short heart beats. Most often this is due to ectopic heart beats occurring so frequently that there is one after each sinus beat, typically premature ventricular contractions (PVCs). For example, a sinus beat is shortly followed by a PVC, then followed by a pause. The normal beat then returns, only to be followed by another PVC.)
Dr. Burton is not concerned about it. Seth is having all IV lines disconnected and his catheter is being removed. He will be able to get up and walk.

8:30 AM After some french toast and bacon the doctors made the rounds. He now has his chest tubes out. He is on celecoxid for pain which is oral instead of IV as he work to be IV free.

5:30 AM X-ray done. He was great about it. Hoping everything is clear. There has been very little draining from the chest tubes, so hopeful they will be out this am and daddy can hold him in is chair.

5am Seth has been able to sleep longer periods, however he is still waking not knowing where he is at. He has been able to recognize Daddy and mommy fairly quickly.

July 27, 2014

8:00pm Seth continues to wake up disorientated and scared. The last time he said he was falling in an elevator. He wants Daddy close to him. At least he recognized Daddy and Nana right away.

7:30pm The website that hosts this blog has been down so here is the afternoon update.

7:00pm Seth received his tylenol through an IV and celebrex in his favorite way; with kalamata olives.

4:00pm His heart was racing so he was given a dose of esmotol to control it.

1:00pm Extra leads on his main line IV were removed. Now the neck can move a bit more.

11:30am Seth woke up and didn't recognize Nana or where he was. He had me bend down to him so he could hold my head and tug my hair. This disorientation is hard on us and him. Finally he asked for Erik and I called Erik to come back. He is quiet now. They have removed all his meds and the only IV left is for fluids. Morphine and tylenol will be given through the IV as needed.,

10:45am Seth's morning nurse is Christie. She took care of him when he had his previous surgeries.

10:00am Dr. Baker, Dr. Horvath-Csongradi, and Dr. Jim St. Louis (from the Minnesota University Children's Hospital) rounded. Dr. Horvath-Csongradi will call Dr. Heisel-Kurth (hematology) to change the narcotics. Seth's chest tubes will stay in for another day.

9:30am Seth woke up and struggles to recognize Erik and Nana, a side effect of the narcotic drugs. This is a side effect we have not seen in Seth before.

7:30am Doctor checked in and indicated that the X-Ray looks good to have the chest tubes out. Still Waiting on rounds for details.

5:30am X-ray taken and he weighed in the same as the day before.

3:30am Seth is awake and wants to walk and do something other than movies.

July 26, 2014

10:45pm Some time during the day, one of Seth's nurse told Sara that Seth's breath might smell of pork. I didn't realize why as the valve was referred to as a porcine valve. It is a pig's valve or as some have said, leaflets inside a conduit.

8:35pm Seth woke up from his nap and didn't know where he was. We had to make sure he didn't pull any lines.

7:40pm Some of what he has had came back up. Need to wait a while for anti-nausea meds to kick in.

4:14pm Clear liquid foods on the way. Chicken broth and Jello.

3:30pm It is now a competition between wanting water and food.

2:00pm Seth is off of supplemental oxygen and he is holding 89% saturation.

1:15pm Seth is finally sleeping comfortably.

12:00pm Every 30 seconds or more since Seth woke up he has asked for water. He now has had about 1/3 of a cup and we are waiting to see if that stays down. Water is his favorite word. He is also itching all across his back.

9:30am Erik and Orion came down. Sara took Orion the sibling play area.

9:00am Dr. Baker came by and said that Seth's chest x-ray looked good. There is still a little bit of fluid on his chest. Every other minute, Seth is asking for water and he has another 3 hours to go. Going to be a long morning. Chest tubes have very little blood flowing.

8:30am Tubes for the stomach and the breathing tube are out. Seth handled the pulling of the tubes like a champ. He liked the fact that he could not talk but not the fact that he can't have any water.

8:00am Seth started to stir at 7:30am and came awake so quickly and was responsive to questions that Dr. Robert Horvath-Csongradi, ordered his tube to his stomach and to his lungs to be removed.

6:30am Yesterday, before Seth went under we asked him what a doctor was called who puts people to sleep. He said a sleepologist. Lasix was started.

6:15 am X-ray. Dr. Hendrickson came in and reduced Seth's meds. They are hoping to pull the breathing tube around 7:00am. He is on Esmolol to control blood pressure and it is a beta blocker and helps with his heart rate. He is now on hydromorphine for the pain and dopamine for blood pressure.

4:50am Seth was given another dose of Factor 7.

July 25, 2014

6:30pm Peter brought Orion down to see Seth. Orion talked to Seth and then sat on the couch to play games. He said that the reason Seth has a hole in his heart was that Seth was mean to him once.

3:30pm We are with Seth now. He looks great. He is on dromophone for pain and propofol is keeping him asleep. When blood labs were done yesterday they found that Seth's platelets to not function correctly. We will have to take Orion in to see if this is genetic problem. Seth has a lead attached to his heart and an external pacemaker in case there is a problem his internal pacemaker isn't programmed to handle.

3:00pm Dr. Overman came in to say that Seth did well. Once in the heart, Dr. Overman found that the mitral valve was leaking on one side. There was a cleft in the anterior leaflet causing one leaflet to ride higher than the other. He adjusted the leaflet and now they are equal. Seth still has a trace leak in that valve.Ventricular function looks good.

His breathing tube is to come out tomorrow morning.

1:40pm Dr. Baker came to tell us that Seth is off the by-pass and doing well. He has a slight leak in the mitral valve. Dr. Overman was able to place a 25 mm Handcock valve in the pulmonary valve area. That is great news.

12:10pm Dr. Baker came in to tell us that Seth went on by-pass at about 11:40am.

10:00am Dr. Baker came out to tell us that everything was going well.

9:51 am Surgery started. We were told that along with Dr. Overman, Dr. Moga is in the operating room.

8:30am, Erik and Steff walked as Seth was wheeled into the operating room.

8:15am They gave Seth the "loopy" [versed] medicine. It is a terrible tasting liquid. Seth almost threw it up. Steff had brought Seth lip gloss with interesting smells. He chose root beer for his oxygen mask. Dr. Overman came in to see if we understood the procedure and if we had any questions about the surgery and Dr. David Dassenko, anesthesiology, checked with us to make sure how he would take care of Seth. Dr. Dassenko has taken care of Seth before.

7:00am Seth, Erik, Peter and Sara arrive and were escorted to the 4th floor surgical prep rooms by nurse Kathy. She has been Seth's nurse for most of his procedures.

July 24, 2014

Sara took Seth to Children's Hospital for his for blood labs at 12:30pm today. After being stuck in his left arm and the needle wiggled around and pushed in and out about 8 times another technician came in and found a good vein in the right arm in one go. 10 small vials of blood later, Seth and Nana headed up to the Heart Clinic. His vitals are: weight, 52.8 pounds, 49.5 inches tall, 104 heart beats per minute, 98% oxygen and blood pressure 121 over 66.

We met Dr. Hill for the first time. She went over what the procedure for tomorrow would be. Most interesting part was that they will put a camera inside the heart to look at the mitral valve before and after the surgery to see how the valve functions after being repaired.

Then on to the hospital for a 2 hour pre-op. Seth is now old enough for the nurses to explain to him what they will be doing to him to prep for the surgery. Then we had a tour of the 4th floor and was reminded where everything was. Walking down the ward, I (Nana) realized that although it was four years ago since Seth was there, I hadn't forgotten much, but all the faces have changed. It will be interesting to see if any old familiar faces show up while Seth is recovering. Seth last thing was getting a chest x-ray.

July 21, 2014

Seth will be getting a Medtronic Handcock valve. The Hancock® II porcine bioprosthesis is a second-generation valve that can be used in either aortic or mitral positions. The Hancock II Ultra® valve, featuring a reduced sewing cuff, is specifically designed for implant in a small aortic root.

In Seth's initial open heart surgery, three named procedures were completed; Nikaidoh, Warden, LeCompte--the LeCompte brought the arteries to the front of the heart, beneath the sternum. The new valve will be located under the sternum and therefore subject to distortion due to pressure. This valve can handle that pressure. Dr. Overman expects the valve to last 5 to 7 year with a possibility that it could go 10 years. Assuming they are able to place a 18mm valve--when Seth needs to have it replaced-- they can do a catheter valve (Melody by Medtronic) through the groin and place it inside the Handcock valve. The Melody valve is expected to last 5 to 7 years. At that point, Seth will need another open heart to replace the valves.

Handcock Valve

The repair of the mitral valve is a bigger concern as to how the ventricle will function when repaired. There is a small--but measurable-- risk of acute Left Ventricle (LV) decompensation in the scenario of removing significant Mitral Regurgitation (MR) in setting of diminished LV function. Dr. Overman expects the ventricle will remodel itself to handle the lower pressure. " MR is the most common form of valvular heart disease."; See more here; http://en.wikipedia.org/wiki/Mitral_insufficiency

In layman's term, Seth's enlarged left ventricle is a cause for concern, the valve repair will mean less leakage--good. However, now the LV is larger than it needs to be. We're hoping it shrinks to normal size without undue complications.

Seth will be on the table 4 to 5 hours.

July 10, 2014 We have just heard from Dr. Sutton's nurse that we should plan on Seth being in the hospital for 2 weeks and 6 weeks recovery at home.

July 6, 2014 We have been informed that Seth will be having his open heart surgery on July 25th. His mitral valve has a moderate leak and Seth is missing the pulmonary valve. The mitral valve is on the left side of the heart between the atrium and the ventricle. The pulmonary valve is on the right side in the right ventricle and controls the amount of blood flowing to the lungs. They will be putting in a pulmonary valve and repairing the mitral valve.Seth will be on a lung/heart machine for the surgery.

June 12, 2014

1:00pm Seth is just getting going. Groggy but in good spirits. He got to ride in a wheel chair to the parking ramp. Erik took him home to rest. We will not know the results of the test for a week if we are lucky, more time if we are not.

Noon They brought him back about noon and he immediately asked for Erik to take him to the bathroom, then back to sleep. He handled the test well.

9:30am Seth was taken back and put under, then wheeled to Abbott Hospital for the CT scan.

7:30 am Erik, Seth and Sara arrived at Children's Hospital for Seth to have a CT scan of his heart. After getting him ready, Seth settled down with I-Pad in hand to play games. Steff join us.

April 19, 2014

During the last year, Seth has made great progress in controlling his melt downs, staying on task with his school work and he has done so well on a computer program for reading that he has started reading at the second grade level. He is enjoying school. Yesterday, Seth and Nana saw Dr. Sutton. Seth is now 50.5 inches tall and 50.8 pounds. His pacemaker is pacing the upper chambers of his heart 100% of the time and the lower chambers 15%. The pacing on the lower chambers increased 3% over the last 6 months. The left ventricular looks good. The right ventricular is slightly enlarged. The mitral valve has a mild to moderate leakage and leakage continues where he should have a pulmonary valve. He had a x-ray and an ultrasound. Dr. Sutton said that the heart looks good.

On June 12th, he will have a CT scan done at Abbott hospital. This will help the drs. get a better picture of his heart. This will help them see the artery where they did the balloon procedure, which failed. They keep reminding us that he will need to have another surgery but no one is hurrying that time line along.

April 19, 2013 Seth saw Dr. Sutton today. His heart is doing well. He is now 47 3/4" and 46.8 pounds. Pacemaker is working fine. There is only one drug Dr. Sutton didn't want Seth to have, so there should be something that Kathy Lund could start Seth on for his ADHD.

April 18, 2013 Seth met with Kathy Lund, DNP,RN,CNS to discuss what type of meds he could take to help control his ADHD. She will work with Dr. Sutton to see if there is a drug he can have that won't hurt his heart.

March 28, 2013 Seth med with Patricia Evans, PHD, LP to start therapy on learning to control his meltdowns and work on his sleep issues.

February 1, 2013 In January, Seth was tested at Groves Academy for a comprehensive psychoeducational evaluation. Seth is having a very difficult time at International School staying on task, transitioning between tasks and he is having meltdowns and unable to control his emotions. Seth tested average to high IQ but with a processing speed issues. He was also diagnoses with severe ADHD. Amazing that Children's Behavioral department labelled him as having no issues. So there's another year lost.

November 28, 2012 Seth started bleeding from his mouth in the middle of the night. He didn't tell Steff or Erik so off to school he went. He wasn't there long before he was off to the nurse's office as the bleeding got worse. Steff picked him up and took him to see the dentist. Nana met them there. Seth is getting 3 of his 6 year old molars in and his lower right one had a flap of skin on it and that created a blood clot. The DDS removed the blood clot and prescribed some medicine that Seth could swish around in his mouth to stop the bleeding. The medicine worked for about 10 minutes when the bleeding came back again; slowly at first. By 1:30pm Steff had called the Hematology clinic at Children's. They told her that she could take Seth to emergency and maybe a factor 7 IV would work and maybe it wouldn't. Nana drove Seth and Steff to Children's Hospital and Erik joined them there. Papa took care of Orion. By now it was 3:30pm and Seth was filling a gauze 2 1/2" by 2 1/2"; with blood every 10 minutes and it was getting worse. The blood was getting darker and thicker. By 5:30pm he was needing a new gauze every 5 minutes. Then he received an iv and the factor 7. At 6pm the bleed had stopped and around 8:30pm. he was able to go home. Mary, Seth and Orion's nanny, came to visit him. Seth was at the hospital for the extra couple of hours as the drs. tried to determine if Seth was going to have join issues as the bleeding was so close to the jaw hinge. Now we wait to see if the left lower will cause his a problem. The upper teeth seem to be ok.

October 25, 2012 Seth saw Dr. Sutton today. His heart is doing well. Dr. Sutton reminded us that Seth will be needing another heart surgery and it will be an open heart. There is no date set. They are waiting for the heart to show stress.

October 23, 2012 Seth saw Dr. Sundberg today. X-rays were taking of his legs. The right leg is straightening on its own. The next appointment will be in 3 years.

May 10, 2012 The testing at the Neurodevelopment and Neuropsychological departments found no major problems.

May 7, 2012 Seth will be having full day of testing at Children's Cardiovascular Neurodevelopmental department of Children's Specialty Center. He will be receiving a Neuropsychological evaluation, a Developmental-Behavorial evaluation and a Occupational Therapy evaluation that day.

April 27, 2012 Seth had a pacemaker check, ultra sound and general check-up with Dr. Carter. Everything looks good. The heart is still enlarged a bit on the right side. Seth's meds are staying the same. His next pacemaker check will be in 3 months and done over the phone and the next physical will be in 6 months. Seth is 43 1/2 inches tall and 43.8 pounds.

January 6th, 2012 The pacemaker check over the phone was done and everything looks good.

Next checkup will be a pacemaker check over the phone in 3 months.

October 3, 2011

Erik took Seth to see Dr. Sutton today. Seth had a pace maker check, x-ray and ultra sound. Everything looks good. Meds stay the same. Seth is now 39.2 pounds and 42.9 inches tall.

July 1, 2011

On June 27, 2011, Seth was 42.75 inches tall and 37.7 pounds. That is a 3 inch growth in 10 months and a 4 pound weight gain. He met wih Dr. Carter today. His pacemaker is running well. He had an echo and there is no change in the function of his heart. Seth has been handling the reduced lasix and Dr. Carter reduced his lasix again. It is now 1.5 ml once a day. This is wonderful as Seth is able to stay dry at night if he doesn't have that med. The enalapril, at 4 ml twice a day and his once a day baby aspirin didn't change. We did find out that there is a pill form for the enalapril, so when Seth can swallow pills, he can change to that. That would make life much easier as the enalapril must be refrigerated.

May 1th

Called St. Sutton and requested that Seth's lasix be reduced while we are in Florida. It will be very hot and we are concerned that he will dehydrated. Dr. Sutton did so.

March 18, 2011

Seth met a new Doctor today, Dr. Carter. He specializes in arrhythmia. This time, Seth didn't get an x-ray or ultrasound. His pacemaker did get adjusted. Seth's heart was beating mostly in the 80 beats per minute range and didn't get above 120 or so. That meant that he had energy to do daily tasks but when exercising he had no stamina. We saw that clearly when he was in swimming lessons; he would have energy and go all out for about 15 minutes and by the end of the half hour he could hardly kick at all and would start to be afraid while swimming. The slight adjustment to the pacemaker was to make it more sensitive to Seth exercising and hopefully give him more energy. We saw a slight improvement on Sunday in swimming lessons but he still didn't have energy at the end of class. There won't be another adjustment until June if this isn't enough. The pacemaker sensitivity is increased a little at a time to give the heart time to adjust. Seth's meds were not adjusted. Blood labs were pulled to make sure the potassium level is correct.

February 1, 2011

Erik and Sara took Seth to the Hemophiliac clinic today. About a week and a half ago he got a bruise around his right nipple. After a week the bruising started to get worse instead of better. The clinic determined that he probably had a bleeder under the skin. They put an iv in and gave him a dose of Factor 7. The main thing we learned is that if either Orion or Seth develop bruising around a joint, they have to go in for the iv immediately. Blood in the joints leads to early arthritis in the joints.

January 6, 2011

Welcome to the New Year. Seth had his appointment with Dr. Sutton on December 22rd. He had an x-ray and ultrasound. His heart looks great. Medications stayed the same. They are continuing to watch the flap which is operating as if it was a valve, his other leaky valve and the stenosis of the artery that feeds the right side of his heart.

September 28, 2010

Seth saw Dr. Sundberg, orthopedic surgeon, today. He had x-rays of his legs taken. The right leg is the one they are concerned with. Last year it splayed 10 degrees toward the outside of the body. This year it is 6 degrees. At this time, Dr. Sundberg believes that the leg will correct itself or if needing treatment, it will be a minor intervention. He will go back in 2 years for another x-ray.

September 24, 2010

Seth had 3 appointments this week. On Monday he saw his pediatrician Paul Mackey. She said he was looking good and everything was on track. He got his flu shot. On Friday he will get his pneumonia shot.

On Wednesday, he was in the hospital for a CT scan. He started at Children's at 8:00am and after he was 'loopy' he was transported to Abbott for the scan to be done in their cath lab. We didn't get any results that day as it takes the computer and technician 6 hours to render all the information into usable form for the Drs. The best part of the morning was that Seth didn't come out of the anesthetics like a mean drunk.

Friday was a check up with Dr. Sutton and to have the information his pacemaker has stored since it was put in looked at. As we thought, Seth's heart rate only got above 80 beats per minute 2% of the time. The leads look good. So they tweaked the pacemaker to keep the low rate at 80 beats and turned on part of the pacemaker to allow the heart to rise to 150 when he is exercising. Hopefully this means he will have more energy to run and play with his friends. His heart is so efficient at using the pacemaker's battery that there is a possibility that he will be 14 before he will need a new one.

The down note is that the balloon procedure done in July didn't hold. They will not be doing another balloon as it has the potential to cause more problems then it will fix. So for the moment, he just waits. His case now goes to committee to discuss the next step. They may choose surgery or just wait to see if the heart will make enough 'roots' around the problem so surgery would not be necessary for the heart to get enough blood or they may choose to put him on an adult drug. Unless they call us, nothing will be done before the next check-up in December.

August 27, 2010

Seth saw Skye in the Hemophilic Clinic and Dr. Sutton in the Heart Clinic today. Blood was drawn to check is Factor 7 which is up to 36. Still very low but not dangerous. One concern is that because of the balloon procedure to open the artery on his heart, he takes one baby aspirin a day and that is not recommended for people with the Factor 7. Skye will be talking to Dr. Sutton to develop a workable medication schedule to balance the ballooned artery with the Factor 7. We are noticing that his legs are all black and blue from bruising that is not healing as quickly as it should. Skye also told us that the discoloration on Seth's groin area on both legs may not go away. When people with Factor 7 don't heal quickly sometimes the cells take on a brownish/grayish coloration.

Dr. Sutton said that Seth's ekg and ultra sound look very good. Where he has had leakage with 2 of his valves there is improvement. Dr. Sutton agreed that he and his team will work more closely with the Hemophilic Clinic in the future to help Seth heal quicker. A decision about the aspirin will be made after Seth has new pictures taken of his heart at the Minneapolis Heart Clinic on September 22nd.

August 10, 2010

Seth, along with Mom, Nana, and Orion, met his new pediatrician, Dr. Paula Mackey, at the Children's Hospital and Clinics. Wonderful first time visit and great suggestions. He will see her in September for his late 4 year old check up. We believe it will be less stressful on the family if his main doctors are in the same area. This way when there is a problem we just have to walk over from the Pediatric Clinic to the Heart Clinic.

He is 39 3/4 inches and 33.5 pounds. He was in great spirits and we had to talk loud to talk over him. Although it was a bit annoying, seeing him with the twinkle in his eyes and enthusiasm to explore the equipment in the room was delightful to watch.

July 30, 2010

Seth saw Dr. Sutton today, had an ekg and x-ray done. Lungs and heart are clear of water. He is 33 pounds. The pacemaker is doing what it should. His appetite is up. He has a lot more energy and his color is great. We are able to remove the 2:00pm lasix and in 2 weeks will stop the spironolactone. Dr. Sutton says that once healed Seth will be able to go on all the amusement park rides at places like Disney World. Great news. It is hard enough to keep track of all the appliances that he has to be 6", 12" 2 feet away from and the things he can never do.

July 26, 2010

A picture of the pacemaker has been added to July 22nd's notes.

July 25, 2010

>>>>Seth Goes Home Healthy--Hurray! 4 Stars all around<<<<

6:30pm The Grimm's get together for a family dinner.

Let's call this a 4 star visit to Children’s Hospital. Typical stay for a pacemaker implant, 4 days. Seth's out in 5, besting the 8 days we were concerned about--Star 1. Star 2, no water on the interior body cavities. Star 3, heart swelling is reduced. Star 4, liver is functioning well. So what a huge difference between the recoveries of his first surgery and this one. Okay, substantially less involved. The Factor 7 substance that was given to him before the surgery really made a difference. Yea!! No post-operation physical or occupational therapy.

Steff is to call on Monday for an appointment with Dr. Sutton and schedule a pacemaker appointment for about 7 weeks out.

2:30pm Off to see Toy Story 3 with Mommy, Daddy and Grandpa Rick. Dropped Orion off at Nana and Pappa's.

12:00pm Paperwork, paperwork, it takes a long time to get discharged and be on the way home.

9:00am Seth gets to go home. But first, the central line iv has to come out and discharge papers need to be created.

8:00am Breakfast is here. Last night was a long night. Erik got to watch the fireworks but Seth wasn't interested. It was 2:00am before he fell asleep.

July 24, 2010

9:00pm Sara is home and Erik is staying the night with Seth.

3:00pm Sara leaves after Erik and Steff arrive. Sara's home about an hour and Seth pitches a major fit. He wants Nanna back! Change of clothes and on her way.

9:10am No suppository is needed. Great!! One step closer to going home.

8:30am Rick is here and feeding Seth Grandma's Bea's banana cake for breakfast. Right now we will settle for anything that has calories and the cake is excellent. Yes, I took more than one bite. Rick, I and the nurse convinced Seth to take a suppository to help him poop as soon as the nurse comes back from break.

8:00am Drs. rounded. Seth is not eating or drinking enough to let him go home. Morning x-rays and labs are good, heart swelling is still down, no "water" where it shouldn't be. He needs to drink, eat and poop and then he can go home. Dr. Sutton believes it will be tomorrow.

7:00am I (Sara) stayed the night. We were up at until 11:00 before Seth fell into a deep sleep and I could turn off Willy Wonka movie. He was up at 1:00am 3:00am 4:00am and x-rays were at 5:45am.

July 23, 2010

7:00pm About 4:00 Grandpa Rick came with cookies and cake from Grandma Bea. Erik headed home for rest. Seth was asleep and Sara and Peter went out for dinner. Dinner arrived and we quickly put it into to go bags and headed back. Seth had awoken and didn't like the fact that we had left.

300pm Erik is pulling Seth in a wagon back and forth in the corridors. I (Sara) rocked Seth to sleep and then put him in his bed. Erik finally got some rest. I went down to the family room to eat lunch and of course Seth woke up.

2:30pm Seth is doing well. His chest tube and hand iv were removed this morning. He only has the central line (IV to the heart) in his neck left to come out. His cheeks are flush for the first time I (Erik) can ever remember. His hands are also warm. I am exhausted because we were lowering the pain meds and got too far behind. Pain meds were increased to help with the removal of the chest tube. We have been up since 3:00am, except for an hour nap by Seth. I have been napping in the room as I can.

July 22, 2010

5:00pm The Drs. rounded. Seth looks good and Dr. Overman will be back to remove his chest tube. Seth is scared and wants the tube left in. He doesn't want to go home.

We now have a description of what Seth's heart was doing before they 'shocked' it after the second cath procedure. His heart went into atrial tachyarrhymia---atrial flutter---that is a rapid, regular heartbeat, with a typical range of 150 to 400 beats per minute. The pacemaker will be able to detect this rapid heart rate and attempt to restore the heart to a normal rhythm.

4:30pm

This is a description of Seth's pacemaker.

"The Medtronic EnRhythm® pacemaker is a small, implantable medical device prescribed for people with a slow or weak heart rhythm to stimulate the heart muscle with precisely timed pulses of electricity.

The EnRhythm pacemaker, which delivers electricity to both the right atrium and right ventricle, promotes natural heart activity by significantly reducing unnecessary pacing in the heart’s right ventricle when normal heart conduction is present by automatically switching to pace the right atrium. The EnRhythm device is the first-ever pacemaker to offer this exclusive feature, called MVP® or Managed Ventricular Pacing. With MVP, the device can be programmed to deliver pacing pulses to the right ventricle less than 5 percent of the time, compared to 50 percent or more with typical dual-chamber pacing. This is an important clinical benefit since clinical studies have shown that unnecessary pacing in the right ventricle can increase the risk for heart failure and atrial fibrillation."

4:15pm Dr. Sutton said that Seth looks great and maybe he could go him on Saturday. We've heard that before.

4:00pm The pacemaker tech came by and upped the lower rate for beats per minute from 70 to 80.

11:45am Erik stayed with Seth last night. He stood by the bed and raised and lower Seth's head, trying to find a comfortable position for Seth for most of the night.

The Drs. rounded and said Seth was doing well and the only thing they will be doing is tweaking the pacemaker. Seth now has rosey red cheeks and he's not sweating. His catheter has been removed.

Jocelyn stopped by. She believes that Seth's liver will no longer be enlarged as the faster heart rate will move the blood through the liver better and that he will stop retain fluids in his body. It would be wonderful to get him off the diuretics.

July 21, 2010

6:15pm Looks like the fine tuning will happen sooner than later; the programming doesn't seem to be working the way it should. Sometimes it seems to be pacing all 4 chambers and is faster than it should be.

6:00pm Seth is slowly waking up; a few sentences, a couple of drinks and back to sleep. His sternum was cut about 2 1//2 inches up from the bottom. He has a chest tube and a central line in his neck and 1 iv in his left hand. His heart is changing rhythms and the pace maker will have to be reprogrammed. Dr. Overman joked that we shouldn't get too set on understanding exactly what the pacemaker is doing as it will have to be fine tuned a few times.

3:30 PM Seth is out of surgery and has a pacemaker and chest tube. They say the procedure went as well as it could. We were a little surprised at how fast it went as well. Dr. Overman performed the procedure, but we have yet to ask specifics. The anesthesiologist was DeSotto; the same man who did it the open heart procedure.

How Seth's pacemaker is functioning currently;
The pacemaker is sensing when the atriums beat then it does the ventricles. If his heart rate goes below 70 then the pacemaker will pace both the atrium and the ventricles. It also has a built in defib in case he goes back into a hypotactic rythum like after the cath procedure.

8:00 am At noon today Seth will receive his pacemaker. He has to be at the hospital in pre-op at 10:30am. It has been an interesting few days trying to figure out what the game plan for him is. On Monday Steff called the Heart Clinic to find out what the requirements were for feeding Seth on Tuesday night. She was told someone would cal her on Tuesday or Wednesday. Her response was, 'Isn't Wednesday a bit late as that is the day of the surgery?' On Tuesday at 1:30pm, Seth saw Dr. Sutton and ekg and x-ray was done. And then on to pre-op in the hospital; which we didn't know was coming, but should have remembered from the last surgery. When he comes in for a cath procedure, the intake is done over the phone. Good thing no other plans were make for the day. We were met by Nurse Kathy and joked that we were really getting to know her. She has been on the floor for all Seth's heart surgeries and caths, but not always his nurse. Blood was taken for cross matching in case he need some and also to check his factor 7. Seth only cried enough for the needle to go in. As much as he hates going through this, he has been extremely brave. After he asked for a sterile wipe. He has taken to wiping down the ends of the ivs which are not in use---imitating the nurses. Although he didn't have an iv, he wipe down the area around where they took his blood. After watching Seth do this, Nurse Kathy mentioned that Seth had been here too many times.

The anesthesiologist when over how he will be taking care of Seth during the surgery. He mentioned that Seth as a very unusual case. He had not been told if the procedure would be a small incision or a full sternum cut so he as ordered up the meds needed in case the need to do an open heart surgery. We believe it will be the smaller incision but realize that Dr. Overman and the rest of the team has not seen the current ekg and x-ray. Steff, Seth, Orion and Sara were home at a little after 5:00pm and realized that on the instruction page for the feeding schedule there was no information about giving Seth evening meds. Steff called Dr. Sutton to clarify that question and she also found out that Seth will be getting a pace maker with a defibrillator built in the pace maker and that they will be leaving some leads outside of Seth's chest. At this time we don't know if they are temporary or permanent. Decisions were still being made at that time.

July 16, 2010

7:00pm Here is another link to the before and after pictures of the cath procedure that was done on July 9th; the images Before and After.

4:30pm Seth had a good day at school but no energy. The teachers say that his energy comes in short bursts.

3:00pm Seth is now scheduled for a pre-op with Dr. Sutton on Tuesday and will have his surgery to put the pacemaker in on noon Wednesday. Normally it is about a 4 hour surgery. They will have to cut part of his sternum to get the leads to the heart and cut in the belly area to put the pacemaker in. We are waiting to find out if he will be having another cat scan done at the Minneapolis Heart Institute.

1:00pm Steff called Dr. Sutton. The concern is that Seth has no energy and while they were at the Mall of America last night he was sweating while riding in the stroller.

July 15th, 2010

Last Tuesday Seth got a 5 lead ekg harness put on him. He wore it for 24 hours. It was returned Thursday morning and it will take 48 hours before Dr. Sutton will have the readout from the machine. We don't expect to hear from the Drs. until after their Thursday morning meeting to discuss the various cases.

July 10, 2010

10:00am Marching Orders---Seth's heart is beating from the ventricles and the beat is slow (about 65-70 BPM) and not consistently regular. Dr. Burton thinks that's good enough for now--go home, yeah!

Seth is to see Dr. Sutton this week for a 24 hour telemetry chest band (see below at Happy New Year January 1, 2010 for details, when he had this done once before) and to start working on a date for the pacemaker to be put in. A pacemaker stay in the hospital is estimated to be an 8 to 10 day stay. Dr. Burton would prefer it be done sooner than later. If he is to have a pacemaker we would like Seth healed and back in school on a regular basis before mid October. After a pacemaker implant, in order to allow the leads to stabilize, physical activities are to be limited, for instance, no hands over head and so on. More when on this when we get closer.

9:00am After putting an adhesive patch on the center of his chest and one on his back, a fast acting sedative was put into his iv and he cried. It stings when it goes in, said Dr. Burton. And fast acting it was. Less than one minute of Seth crying and the next he was as limp as a wet rag. Hard to watch the 'life' go out of him. It was suggested that we not stick around to watch them shock him. The procedure was over in minutes; another 12 lead ekg was done. About 20 minutes after we left, we returned. It took him another half an hour for him to wake up.

Breakfast was ordered and Dr. Burton came in to say Seth could go home. We all thought he was kidding. We had to explain that we have heard that before only to be told a bit later that Seth need to stay 'another day'.

7:30am The drugs did not change or "cure" his arrhythmia. He is in good humor and understands that he can not have food or water until they are done 'shocking' his heart.

July 9, 2010

10:00pm Peter stayed over night. Set went to sleep about 10:00 pm, I put a blanket over his shoulders he closed his eyes and was out until 7:30am.

6:30pm Dr. Burton told us that Seth's heart rhythm is not correct. It is still beating from the ventricles to the atrium and what we saw and thought was a normal heart rate of 125-155 beats per minute is actually the rate the ventricles are beating with the atriums being double that rate. Much too high. Dr. Burton planned on shocking Seth's heart back into a slower rhythm this evening but Seth would have to go 8 hours without food and water and already has missed breakfast, lunch and only had part of dinner. So Dr. Burton changed the orders to give Seth meds this evening and let him eat. The electrical stimulation will be done in the morning. They have to put him under again to do it. One paddle under him and one on top of his chest. One shock and the heart should start beating correctly; although Dr. Burton believes that it will continue to beat with the ventricles leading. If this is the result, Seth will need to have a pacemaker put in. Possible other scenario is that the increased flow from today's cath will increase the heart rate. So, we thought Seth was to go home tomorrow now it is wait and see again.

3:30pm Dr. Burton helped remove the iv from Seth's left groin. The nurse had to hold pressure on it for about 20 minutes before the bleeding would stop.

1:00pm Our 'mean drunk' is back. It took about an hour before Seth started to sound normal. Noon time meds in him and he has fallen back to sleep. That's great as he has to lie still for 7 hours and possibly longer as the left the iv in his groin stitched in and will remove it at 3:00pm.

12:30pm Dr. Baker met with Erik and Sara and showed us the before and after pictures of the artery. They were able to increase the diameter of the artery about 50% which gives a 3000% increase in blood flow. The pictures show an artery which is barely visible to one which is almost the correct size. Dr. Baker gave Dr. Wong the credit for doing most of the cath. She had brought over a large bag of equipment to use and was able to see equipment used on children that she hadn't seen before.

The images Before and After.

7:15am Seth, Orion, Erik, Steff, Peter and Sara arrived at Children's for Seth's cath/balloon/stent procedure. Seth was morning crabby and because he knew what was coming was uncooperative at first. Dr. Baker and Dr. Wong are to do the cath.

The past few days have been amazing. Seth has energy in excess. His heart rate has been about 128 beats per minute. His skin is soft; something he has never had and there is no blueness in his face and fingers.

July 5, 2010

"Happiness is coming home from the hospital" (*)
1:30 pm Seth walked in the door and Nana and Papa's about 1:30 this afternoon. Apparently the 12 lead EKG and echo went fast and well. Since Erik was there, he checked Seth out. Seth helped papa rewire the bathroom fan, and headed home for a well earned nap. To minimize health risks he won't be going to school this week.

Until Friday's Angioplasty with stent implant, here is the new diuretic regimen. He's getting 2ml of lasix 3 times a day, spironolacton 3ml and enalapril 4ml twice a day. He is good about taking his oral medications--especially if we can get them cherry flavored.

(*)Peanuts for Monday, July 5th in today.s Star Tribune. You can see it here (maybe.)
http://comics.com/affiliate/minneapolis/?ComicID=69
Charlie brown sits at the end of is walkway, next frame looks up to see, third frame he exclaims Snoopy! In the last frame they are reunited. Snoopy says, " Happiness is coming home from the hospital". Who says there isn't synchronicity.

10:00am Erik stayed with Seth and were up until 1:30am. Seth was wired with more energy than he has had since his September surgery. Doctors came in and were pleased with the high heart rate (which is close to normal). This afternoon, a planned 12 lead EKG and echo to check for hidden problem(s). Pending a positive outcome, he will be released this evening.

July 4, 2010

10:00pm Fireworks are spectacular and we can see several different neighborhoods. We look north and watch the ones over the Metrodome. Seth's live-wired, he's active and talkative. He's got this great introductory line "what would happen if..." As in, 'what would happen if you put some blue ice cubes (we made these a month ago) and put them in your (yellow) ginger drink.' Answer, it would turn green. (we did this a month ago.) So you really have to pay attention, and it's an interesting way of learning. Sometimes it's nonsense, but then these little, hidden, gems.

8:30pm Peter came in. At this time Seth's heart rhythms are "flipping." That is, his heart rate is now 123 beats per minute (BPM) and up to 160 plus for short duration bursts. Dear reader, if you've come lately to this post realize that Seth's been running 54 to 70 BPM since his operation last September. The new heart rate is nearly NORMAL for a child of his age. It is our non-medical opinion that the pulses are now controlled by the sinoatrial node located in the wall of the right atrium. This is the preferred site for the pulses to originate.

7:00pm Seth is free from the IV tether, but they are keeping needle in his hand until the morning. They don't like to remove them until the last moment in case he should need another medication. Daddy is pulling Seth in a little red wagon up and down the ward. Orion is considering sleeping in Mommy's arms. Papa is due soon to watch fireworks. Last night was disappointing but we have been told that tonight will be great.

11:00am Dr. Baker came in. Seth's IV will stop this afternoon and he is expected to be released tomorrow.

10:30am Nana showed up for her shift.

An early morning of pancakes and games. Dr. Overman stopped in to say hello, and just say that the stent procedure would be a good step towards helping get Seth through the next several years, no one considers this permanent.

July 3, 2010

11:30 pm Seth and Papa start out with, 'I don't want to go to sleep.' It's 11:30 pm, ' I want another Bob the builder, just a little bit.' Tears, bargaining, but Papa stands firm with help of the nurse and he's asleep by midnight.

10:00pm Fireworks. What a great view to see the skyline of Minneapolis and the fireworks. We had just a taste of what will be coming tomorrow.

9:00pm Erik, Steff, Orion, Uncle Brian and Papa showed up for dinner. Brian is entertaining us with his Cello. What a treat to be in a new heart patient room on 4th floor and even be in the one dedicated to Albert W. Cherne. One of the side effects of the medication, Seth’s cheeks and lips are once again rosy red, healthy, alive, ready to roll.

11:00am Dr. Baker showed Erik and Sara Seth's heart images taken yesterday. We are able to see the stenosis of the right coronary artery as well as how the artery back fills itself from a different connection past the stenosis. This might explain why Seth has not been in the hospital earlier to correct this problem. He also described how the artery wraps around the bottom of the heart and over to the left ventricle. It is hoped that with the stenosis opened, the left ventricle will become more efficient in its expansion. They are hoping that the stent will last for 3 to 5 years before a larger one will be needed. He also it said that the cath procedure has little likelihood of needing Dr. Overman's skills that day. But it is nice to know that Dr. Overman will be in the hospital that day.

9:30am. Seth's up and will be taking a shower. Sara's going down to relieve Erik. Seth's due to spend another day, another night in the hospital. They reduced the milrinone, the medication that helps the heart to expand almost in half. They are waiting to see how Seth’s heart responds to less medication and whether or not they need to keep him on it.

July 2, 2010

4:30 pm Dr. Baker stopped in to tell us that Seth would stay the night and possibly the weekend. They are trying to build his system up before the procedure this coming Friday, July 9th. Dr. Wong will come over from Abbott to assist with this next Cath. Dr. Overman will be available if this procedure doesn't work. They will NOT be putting a pacemaker in at this time. They would like to determine if better blood flow to the right side of the heart will increase the heart beats per minute alone. If there is no increase, then Seth will have to come back for another surgery to put in the pacemaker.

Seth's scheduled Cath procedure for the 9th will take place in the "hybrid cath operating room" a unique room, which enables doctors to immediately go from a cath procedure to an open heart surgery as the situation requires. In other hospitals the patient would need to be moved to a surgery room for open heart operation(s).

3:30pm Dr. Overman came say Dr. Grimmels and Dr. Wong (from the Abbot Heart Institute) reviewed the pictures taken this morning. Next Friday, July 9th, they are going to "balloon the artery" that goes to the right side of the heart. If that works, they will stop there. If not, the next step is to put a stent in the artery--difficult in that the smallest stent made is larger than the artery they need to put it in. (To give an idea of the artery size, stack 3 sheets of paper, or 3 single dollar bills--that's the size it is today 0.2mm, or about 0.008 inches.) That is to say it's tiny. Failing that, Seth will proceed to "open heart" --open him up and do by pass surgery to establish blood flow to the right side of the heart. (Dr. Grimmels talked with Sara and mentioned stitching small arteries is difficult to do. So for this, and so many other reasons, "open heart" is the last choice.)

"balloon the artery" aka " Angioplasty, or "ballon dilation." 'A balloon is used to open a blood vessel that is too narrow.' Seth will have,' Angioplasty with stent implanted. A wire mesh stent is crimped on a deflated angioplasty balloon, threaded into the artery. The balloon is inflated expanding the stent. The balloon is deflated and removed leaving the stand in place to hold the the artery open. This procedure takes 3-4 hours.' Liberally paraphrased from page 28 of "Heart Caths of Kids" .

3:00pm Jocelyn came by to tell us that she found a pediatrician for Seth here at Children's. Seth is making enough trips here and his case is complicated enough so we want a Doctor who is here at the hospital at all times and understands his interrelated, health issues.

10:30am Seth was taken to Abbott Hospital for the Cat Scan. Erik, Steff and Orion joined Seth on the trip through the tunnel between the two hospitals. He was transported over in a special bed. They weren't ready for him so they waited for a half an hour. They medicated him with 2 drugs through the iv; one to sedate him and one to sedate the heart. Erik stayed with Seth while they got the pictures. He had to lie still with his arms up above his head. The actual time to take the pictures was only a minute or so. The rest of the time was prep. Back in the room by 12:30pm. Seth had trouble coming out of the sedation. He acted like a mean drunk. It took him about an hour and a half to finally come around to being normal.

July 1, 2010

10:20pm Erik is staying the night with Seth. He was in better spirits when Peter and Sara, Steff and Orion left around 9:30pm.

7:00pm Dr. Overman and the rest of the team stopped in to update us on what they will try to accomplish tomorrow. At 10:30am tomorrow, Seth will have a cat scan, where they put contrasting dye in the blood. They had planned on doing an MRI, but the cat scan will allow them to see the smaller arteries and veins better. They are hoping that a balloon procedure by a cath, (at a later date) will open the artery. They have put Seth on a drug to help his heart expand. It contracts okay by its self but has trouble expanding. Already his heart rate is back up to about 65 beats per minute. If this works, he will need to be on the medication until such time as a pace maker is put in, or conditions warrent.

1:00pm Erik called to tell Sara and Peter that Dr. Grimmels found one important artery is 0.2 mm--way too small. The correct size should be about 2.0mm. He is concerned about doing a balloon procedure to stretch it open because it is a longer artery than he usually works on. There's speculation that the artery was stretched during the initial open heart procedure, and speculation that it's "always" been this way. Dr. Grimmels called for a consultation with Dr. Wong from the Minneapolis Heart Institute located in Abbet Hospital--across the street for those of you who don't know the local area, the two hospitals are connected through an under road tunnel.

9:00am Steff, gowned up, took Seth back to the cath lab. Sara and Peter went home.

8:00am Seth's oxygen level ranges from 97 to 100%. That is great news. His heart beats per minute is down to 48.

7:15 am Seth, Orion, Erik Steff, Peter and Sara were at the hospital. Seth is having a cath procedure today to determine how the surgery is holding up and whether or not he will need a pacemaker.

June 15, 2010

Seth saw Dr. Sutton today. He had an ekg and an echo cardiogram done. His weight is 34 pound dressed. His heart rate has dropped to 54 beats per minute. That is down 10 beats per minute since his last check-up. Dr. Sutton is scheduling a cath procedure for Seth in the next two weeks. He is concerned about the rate the heart is beating and how one of the valves is functioning. He believes Seth will need to have a pacemaker put in in the next 2 months and possibly other procedures done.

May 8,2010

During the last month Seth had another round of antibiotics of which half way through he developed hives and it had to be stopped and Benadryl given instead. The Benadryl helps to control the itching.

On May 4th, Seth saw Dr. Grimmels. Seth's xray showed no water on the lungs or heart and he has put on about a pound.

Seth is back to being a normal little boy with lots of energy.

April 13, 2010

On Sunday night Seth was coughing hard through the night so Steff took him to see the pediatrician, Dr. Pete, at All About Children. He said the liver was enlarged and there was crackling in Seth’s lungs and his weight was 34.5 pounds with shoes on. He said to contact Dr. Sutton about the diuretics and come back to All About Children on Friday if Seth was still having problems. There was no treatment or tests that he would do.

Last night, Seth’s breathing was labored and with sound; somewhat like an asthmatic. But he slept well and through the night.

Dr. Sutton put him back on 1 ml of Metazalone once a day and wants to schedule a heart cath when this is over to check out his repair.

April 12, 2010

Seth coughed a lot last night, so off to see the pediatrician. His liver is enlarged again and the lungs sound crackly. The pediatrician, Pete, said to call the Heart Clinic for the next step. We have started the diuretics again. We called Dr. Sutton. He was unable to return the call before business hours were over and when we called back the switchboard said that since it wasn't an emergency, we should call in the morning. If there is no major change in him, he is to return to the pediatrician's office on Friday. We feel that we are running in circles and no one knows what to do next to stop the cycle.

Seth is staying with Nana and Papa tonight and we will monitor his breathing and coughing. Right now he is outside helping Papa repair the sprinkler system.

April 8, 2010

Seth woke up in a good mood, ate some cantaloupe and egg. Steff picked him up from Nana's at 9:30am to head to the zoo for the day. By the time they got there, Seth was back to sleep and slept for 3 hours. No amount of noise would wake him. When he did wake he didn't want any food or liquids and was too weak to walk. Steff called Dr. Sutton, picked up Nana, and headed to Children's to see Dr. Grimmels, where Seth rallied, sang and danced. Seth's x-ray shows no liquid on the lungs and the haziness on the right lobe is less. He must be drinking 20 ounces of fluid a day. He will not be on diuretics until he drinks more than the 20 ounces of fluid a day, then his diuretics will be started again, minus the strong new one. Dr. Grimmels made it very clear to Seth that if he didn't drink, he would have to go into the hospital for an iv.

April 6,2010

Seth's fever has broke and he is feeling much better. He played, slept, watched tv, read books and even grazed through Nana's kitchen. He was much more interested in making spaghetti then he was in eating it, but by the time Erik picked him up, he had eaten a fair amount more than he had in the last few days.

April 5, 2010

Seth's fever never got below 99.5ᵒ and did spike at 103ᵒ lst night, so at 1:00pm he saw Dr. Grimmels. In 3 days, Seth lost 3 pounds of water and his liver is closer to normal. His chest x-ray still shows a haziness on the right lobe, but the ekg looks good. There are no problems with the flow of the blood. Dr. Grimmels put Seth on a 10 day oral antibiotic. He will see Dr. Sutton on Friday.
Week ending April 2, 2010
It’s been a long day. Seth came down with a fever last night and we assumed he just had a virus. At 7:00am the fever is still at 102ᵒ. By 9:00am Steff’s intuition was telling her to call Seth’s pediatrician for an appointment. At 10:10am we were at the Dr's. office. Two pediatricians decided that Seth’s liver was enlarged on both sides. The Drs.knew it trouble. They took a throat culture and finger prick, which quickly ruled out an infection as the white blood cell count was not elevated. Seth had a melt down, crying that he didn't want to have an iv. Who could blame him. After the finger prick he calmed down and Sara explained that he had to see Dr. Sutton and if his heart was in trouble, he might have to get an iv. Seth took a deep breath and said that it would be ok to have the iv and he would be a "big boy" about getting it.
On to Children’s to see Dr. Sutton at 1:30pm where Dr. Sutton told us that the Pediatricians thought that Seth was in liver failure. Seth’s fever was continued to be 101ᵒ after dropping only a degree after having Tylenol. A chest x-ray determined that there was more water on the lungs on the right side of the chest. Possible cause is pneumonia. A new much stronger diuretic has been added to Seth’s schedule. The water has to come off. His lungs were clear in January. If the fever breaks, Seth will see Dr. Sutton on Friday; if not then Monday or if he gets worse then any time. The new medicine means that Seth can be in the sun only an hour a day.
Future course of action will be to have Seth get a cath procedure or a MRI to see what is going on with the heart. Dr. Sutton believes that Seth’s recovery has taken too long and that the heart rate is still too low. He believes that Seth will have to have a pacemaker put in. When is still to be determined.

Week ending February 11th

Seth saw Dr. Sutton on February 11th. His x-ray was clear and he has gained a pound. Dr. Sutton took him off the Diurel and the Potassium. Steff was happy as the Diurel was removed as it has the worst side effects. Erik decided that Seth should be weaned off the Diurel slowly. So in a few days he will be completely off it. We are to watch for him getting puffy and breathing harder. That would be a sign that the water is coming back and he would have to go back on the Diurel.

Week ending January 8, 2010

Thursday Seth saw Skye at the Hemophiliac clinic. He had his blood taken and it showed that the Factor 7 was not helped by taking Vitamin K. His INR was 1.4. His level is 36%. The clotting problem is inherited and should not cause Seth or Orion major problems if precautions are taken during surgeries. On a daily basis, small cuts, etc. will just take longer to heal. Seth liked the idea that he won't have to take Vitamin K any more. It tastes terrible.

Friday Seth saw Dr. Sutton. He was weighed and height taken and he is 38 1/2 inches (his height was taken inaccurately last month) and a whole 31.4 pounds dressed. He as grown 2 inches in the last year and has gained no weight. His heart was beating at 64 beats per minute.

On the good news side, his x-ray show no water on the heart. Dr. Sutton reduce Seth's lasix to twice a day. Next month if the x-ray is still clear, he will reduce more of the diuretics.

Seth's results from his 24 hour ekg show no problems with his heart. The issue about the blue coloring of his skin is probably related to his slow heartbeat and the drugs. Advice for now is to keep extra clothes on him. At least he no longer fluctuates between being cold and sweating.

Since Seth is back in school 4 to 5 days a week and has started swimming lessons, we were able to drop his OT and PT.

Happy New Year January 1, 2010

For the most part December was a 'normal' month in our lives.

Seth's attending school 3 days a week and loving it. During the last week Erik started dropping off Seth in time for breakfast and Papa picked him up around 4:30pm. He eats dinner with Nana and Papa. Erik picks him up on his way home from work. Then Seth eats another dinner with Mommy and Daddy.

Our only scare happened on Wednesday December 30th. Seth woke up from his nap at school very cold. His legs were mottled blue to the knees, arms to the elbows and his lips were also blue. After waking up and warming up, sweat shirt, hat and mittens did the trick. He carried on with his day as if nothing was wrong. His preschool teacher, Katie, called Nana as they were very concerned. In turn, Nana called Steff to locate Dr. Sutton and get his advise as to whether or not Seth needed to head to the hospital. Dr. Sutton called Nana and concluded that, as long as Seth was acting normal, he didn't need to be seen. However, he wanted to know what his heart rate was. Dr. Sutton also decided that Seth should have a 24 hour portable ekg. Nana and Papa picked Seth up early from school and brought him home to check his heart rate. Resting, 57 beats per minute. By then, Dr. Sutton had left for the day. Nana talked to Dr. Rios. He asked us to run Seth around and retake the heart rate to see if it would go up. After about 10 minutes of running around Seth's rate was 60 beats per minute. Dr. Rios was concerned that Seth might be developing a heart block--that is when the signal from the atrium doesn't get to the ventricles correctly. Thursday morning Nana and Papa took Seth to the clinic for his monitor and Dr. Rios checked up on Seth and Seth also got an EKG.

Dr. Rios explained that one of the reasons Seth's heart rate is so slow is that the beat originates from the ventricle(s?) rather than the atrium. This is a much slower heart rate. At this point in time we should be worried about absolute heart rates in the 30's, and pay less attention to the blue lips and skin colors, since they are of lesser importance. If everything else is okay, he's alert, active and so on, just carry on.

So the pacemaker technician came in and put on the portable EKG unit, along with it came a diary. In general they wanted to know his waking and sleeping times noted. The EKG unit stored 24 hours worth heart rhythm data and shut off. Erik noted Seth awoke at 9:25 this morning, and the recorder said it would shut off in 17 minutes... and it did. We will turn the unit on Monday, and get information back, we'll update this blog with further data.

Caregivers, all, are concerned that Seth isn't really gaining any weight, 30.2 pounds. 40 inches tall at check in yesterday. We will all be happy when the diuretics cease. Since he's growing taller, and generally in good health, we have much to be grateful for, and most often are.

Week Ending 12-5-09

Seth had two days of school part time and last week his two days were full time by his request. Next week he will be in school full time for 3 days. We are hoping that he will be in school 4 days a week by early January. He still has OT and PT each week. They are working on his upper body strength and skills that a 3 year old should have developed by now.

He saw Dr. Sutton and Jocelyn on December 3rd. His weight has stayed the same. There is still water on the heart so no decrease in his diuretics. His ultrasound looked good. But his heart is down to 63 beats per minute. As long as he is active and doesn't show signs of stress, they will not put a pacemaker in. We wait to see how the heart will function after the water is off the chest cavity and he is off the diuretics.

Dr. Sutton explained the Warden procedure. It was another complication in Seth's heart surgery that everyone was unaware of. Dr. Overman found the problem after he opened Seth up. Seth had a partial anomalous pulmonary venous connection (PAPVC). The two veins were attached to the superior vena cava. The superior vena cava was moved.

So Seth has a partial Nikaidoh, LeCompte and Warden procedures done. Some day we would like to get a drawing of his heart before and after.

Week Ending 11-21-09

Seth had OT, PT and saw Dr. Busch. His weight is 30.8 pounds (dressed). Dr. Busch says that there is a drug we can give Seth to increase his appetite, but she doesn't want to start it unless his diuretics aren't reduced on December 3rd. He received his second H1N1 shot and will go back to school next week.

Week Ending 11-14-09

Seth went to his weekly PT and OT appointments, saw Dr. Sutton and Jocelyn Berbee. On Friday he saw Dr. Busch at brother Orion's one week appointment. PT went fine but he kept having meltdowns during OT. Every other day is tough emotionally as well as physically. He's following a pattern, a big day, and then a down, dragging day to recover.

Thursday, Grandma Joyce visited the Children's Heart Clinic with Steff, Sara, Seth and Orion. Dr. Sutton told us that Seth's chest x-ray looks great and he didn't want to jinx it by cutting back on the meds. Three more week of the heavy diuretics then maybe he will reduce them. Orion got his heart listened to and pronounced health. Then on to the Hemophila clinic where the blood labs were set up for both departments. Seth had blood labs drawn and spent the half hour before crying not want to have the needle. He had an excellent technician, Albe, who pulled the blood. He determined that Seth as a good vein in his left arm but it collapses. Seth's right arm worked well. Albe did one poke and had the blood. Seth's tears immediately dried up and he was doing his normal 'why". "Why so much blood? Why do I have to have the tests?" Why is the big word of the day. It is funny to hear him ask why and then answer his own question. Then, a vial fell on the floor and broke. I (Sara) almost broke into tears, but there was just enough blood left in the original vial to complete what was needed.

Back to Hemophila and an appointment with Skye. She wants to put Seth on a prescription Vitamin K. There is a possibility that Steff has a collagen skin problem that Seth may have inherited which might have contributed to his long recovery time. Seth still has not healed where the tubes were in him.

Friday morning the Factor 7 results came back and Seth is at 20. He was at 27 in the hospital. So, 6 weeks on Vitamin K to see if that is the issue or if he really has a Factor 7.

Orion is healthy and his circumcision is scheduled for next Friday. Seth will get his second H!N! shot and then he can go back to day care, swimming and a more normal life.

11-04-09

Seth had PT yesterday and OT today. He is progressing faster than they thought he would. It would be nice to have his skills back to normal in another couple of weeks so he could return to his pre-school.

11-02-09

8:30am Seth saw Dr. Sutton this morning. His x-ray looks much better. The heart size looks normal and the water on his left lung has diminished. His weight is 30 pounds. There is not much we can do with the lack of appetite and the other drug side effects until the water is gone and stay gone from his lungs. Hopefully he won't lose more weight. His heart rate was 75 beats per minute, which is an improvement.

10-29-09

On Wednesday Seth was evaluated for Physical Therapy and today for Occupational Therapy. He will be getting one hour per week of each discipline. He needs help with his range of motion, flexibility in his spine and will get help in relearning some skills such as dressing himself. Both sessions are designed to increase his core strength and endurance.

10-27-09

Steff and Sara took Seth to see Dr. Sutton. The appointment was a mixed review. Seth is 37 3/4" tall and 31 pounds (dressed). His x-ray showed more fluid on his left lung and his heart is larger than when he left the hospital. His heart beat is 70 beats per minute and should be higher. A normal child has a heart beat between 110 to 120. Dr. Sutton added another diuretic to Seth's routine. Next check-up is Monday morning.

10-26-09
We settle back into an odd even routine. Since Steff is due with grandchild number 2 at any moment Grandparents have stepped into take Seth every other night.
He spent his first night home with parents and kept them up with is tossing and turning.
A hospital room may not be home away from home, but the Lasix diuretic still has to be given every 6 hours and Diurel every twelve. Times have been adjusted for convenience, only the 3 am is a bear. Then we have to watch for the large peeing. Extra diapers and clothes must be within reach.

Now that we are getting a chance to catch our breath we would like to thank everyone for their gifts, well wishes, time, energy and most importantly love and prayers.

10-21-09 Home Again, onto the next adventure.

5:20pm Glib pronouncements of the work ahead do little to stem the reality. After a movie, we got down and put on shoes for a walk to the mailbox in the drizzle. Slow going down the small front steps. Fun to drag feet on the wet leaves and stomping in the small puddles along the way. We picked up several spectacular maple leaves, red with yellow centers. It's recycling day. The turned over green tub, dry inside made a nice excuse for him not to have to walk up the slight incline to the garage. Once inside he got down on the floor, hum, he really doesn't have the strength to lift his head so he can crawl on all fours. Also he's lost the strength to roll over and stand up--he's close.
Then the topic of Tin Man came up. I (Peter) got the box that's been waiting for 3 weeks for him. We opened the package and with some difficulty got it on. We took him up to the hall mirror, a broad smile moved across his face. "Where's my chopper?" You mean your Ax? Yes, we have a plastic Ax for him too. He's quite happy, and we are happy to share in the moment.

Steff is the one who pointed out, Uncle Fritz was born this day more years ago than we care to reveal here. A good day, even though it is raining. The rain is glazing all the yellow Hosta leaves and red and burnt orange maples, giving their color a fresh painted look. Most of the leaves are gone from the Ginkgo tree. The crab-apple trees in the front have not lost all their leaves, and the rain is brightening the cranberry colored fruit hanging from each bearing branch. Yes, a good day, a time to look around, see and sense the Nature's beauty as autumn heads towards winter.

The course of medicines looms ahead--hopefully he will regain his willingness to take them as in bygone days. This will be like, as Sara conversed with her mother, the first year after Seth's birth, weekly, then monthly check-ups as he regains his strength and help. That is, close monitoring, a lot of medications, hopefully telescoping out to few medications and fewer check ups. So far so good.

11:45 Sara drives the car around. Seth, Steff and Sara make their way home, well not quite, an afternoon at Nana, Erik will Pick up Seth this evening.

11:00am Seth is up on 6th floor with OT. Sara wanted him to go, since he specifically asked to go to OT and she could way the half hour. Steff when up to watch his therapy. One of our last goodbyes was to Chaplain Sherry. She stopped by almost every day to check on Seth and see if there was something we needed.

10:50 Seth has been given his walking papers. Now we wait for his iv to be pulled, medications to show up and all the paperwork and appointments made for his checkups over the next few weeks. In the discharge papers it says he can go back to day care in a month, if he is ready for it--probably part time to begin with.

Steff and Sara busy themselves with packing up the acquired games, food, soda, water, juice, apples, clothes, games, DVD movies, and endless bits of everything from the room. Good thing Papa and Nana took an armload to the car when Peter went to work.

9:00am Seth is up on 6th floor with PT---dressed in his own clothes and he helped push the wagon to the elevator.

7:50am Rounds, Dr. Baker, Dr. Overman, Nurse Jocelyn Berbee, and company arrive with the good news. His X-ray is clear, he can go home today. Peter and Sara are present to hear, shake Dr Overman's hand for a job well done. Thanks for all their efforts.
Dr. Overman, 'I just yesterday received a request from Dr Yeh providing him with the course of recovery and a copy of his discharge a papers. I replied to Dr. Yeh, would be happy to comply just as soon as we have him discharged.'
We all chuckled, we really had expectations for Seth to be discharged a week or more ago--somehow life happens in a different sequence that we expect.

7:10 Sara arrives. Power failure at the home planet motivated her out of bed extra early.

4:00am Nurse and Peter wrangle with Seth to give him some Lasix. A little fusing and back to sleep.

NO VISITORS without PRIOR arrangement with Erik, Steff and Sara.
Owing to the H1N1 virus, only 4 visitors per Day can visit Seth INCLUDING
Parents and Grandparents.

10-20-09
I (Peter) arrived at 9:10pm for the night shift. I see Seth, snuggled up to Erik, fast asleep. We waited 10 more minutes then Erik got up. He and Steff left for home at 9:30.
Short discussion with the Nurse. He's due for Lasix, Diurel (diuretics) and Melatonin at 10 pm. If he stays asleep, melatonin won't be necessary.

Seth's X-ray was clear enough this morning to put us all on notice, If it is clear (no water near lungs and heart) tomorrow he can go home. If it's not clear, another day stay, day by day until it is clear. The anticipation is palpable, we're not celebrating just yet. The oral diuretics aren't as potent as the IV administered ones--everyone wants them to work, but the proof will be in the X-ray read in the morning.

6:00 pm Seth had a fit when Sara left. Seth got his first of two H1N1 vaccine shots. He did a very good job with that. Erik brought him asian noodles with shrimp. So that made him happy.
Seth received the first of two H1N1 vaccine shots.

Sara Left at 5:00pm

3:00pm Steff came in. Jocelyn B. started writing up papers and making lists for Seth's potential discharge. One of these days he really is going to go home.

1:00 OT came--no more pillow in the wagon, he must sit up on his own. They had Seth play with soap foam on a mirror and other small motor skills work.

12:00 Back from Pt, lunch and a nap.

10:00 Pt came and Seth went to the 6th floor in his wagon. He bounced trampoline, he he rode on the swing, and played with balls, all to aid his large motor skills.

10-19-09

11:00pm Seth played games and went walking. He was able to walk without help and off to flirt with the nurses he went---and get ice cream. Erik and Steff left for home about 9:30pm and Sara is spending the night. I (Sara) got his medicines in him orally. All of his meds are now oral. Tomorrow's x-ray will be telling. Hopefully, he is able to keep the fluid off the heart with just oral meds. If not, then back on the iv for a while longer.

6:00pm When Nana got back about 2:00pm, Seth was fast asleep. A short walk and a wagon ride, and Mommy and Daddy came in. Erik was able to go back to work for a few hours today. Nana went home to have dinner with Papa.

10:30am Seth had OT and played hard on the floor mats. Now that the tube and all the equipment is gone, Steff can take Seth for walks.

9:00am Seth and Papa had breakfast together and then the chest tube was pulled out. Seth thinks that he still needs the tube. Children become dependent on it emotionally. Seth, Nana and Papa took a walk. Papa went home and Nana took care of Seth until Mommy came.

It is an odd feeling walking passed Tyler's room. There is another child there now, but to me (Sara) it will always be Tyler's room. It is sort of like the odd feeling I have when I look directly across the hall into the room which Seth and George had a little over three years ago. Memories.

10-18-09

10:00pm Peter is staying the night. Seth walked with Mom, Dad and Soren and took a wagon ride down to see the ball machine in its new location. The new iv is very sensitive, so the meds have to be pushed very slowly.

7:00pm Tyler's parents came by and gave Seth a cute bear. The bear is holding a disk which says, Feel Better Soon! Take One to Smile. Tyler passed away today. Our hearts send his family prayers during this difficult time.

2:00pm Gloria, an anesthesiologist, came in an put an iv in Seth's right hand. Seth received his meds from this morning, went for another walk and is watching the Leroy and Stitch movie.

10:30am Twice a nurse tried to put in a new iv in Seth. First time was in his right arm and then in his left foot. Both worked for a minute and then they blew. After that Seth and Nana went for a walk. We are waiting for someone else to come and try to get an iv in him.

9:00 am Seth's iv finally gave out with the 2:00am lasix. I (Sara) was in bed with him because he wanted his arm rubbed. There is pain there when giving the lasix. During the flushing of the iv line, fluid showed up between the bandages. His night nurse, Suzanne, removed it. Dr. Sutton was here and Seth will have to have another iv put in this morning. There was no output from the tube last night and they will wait for Dr. Overman to say that it can come out.

10-17-09

11:30pm At 8:30am Mom and Dad came bringing new toys. Because of the construction, most of the toys have been removed. Seth got up for OT and PT and played with Mom and Dad throughout the day. Sara came back about 8:30pm. I (Sara) took him for one last walk. He went down the hall to find out that Thomas the Tank was missing, back to the main desk to flirt with the nurses and receive a Spiderman sticker. Then on the what is left of the playroom. All the toys are gone from here, but there is a tic-tack-toe game on the wall and Seth played with that. Back to the room and his reward is a piece of Tyler's cake. Seth finally fell asleep about 11:00pm.

7:00am Seth fell asleep around 11:15pm and slept through the night. Only twice did he ask for something to drink. His weight is 30.4 pounds. X-ray was here and all his vitals were taken.

10-16-09
10:00pm Seth played Mr. Mouth with Mom and Dad and was in good spirits. The nurse gave him methadone with out telling us. When I (Sara) got in, I asked the nurse to show me why she thought she should give the methadone to Seth without asking us. Sure enough, it is still on ordered daily medication not on the form for as needed. That is to be switched today. That is one of the difficulties we face when there are new nurses every 4 to 12 hours. He is also having trouble with his iv and receiving his lasix. It causes a burning feeling, even at a very slow rate and being mixed with maintenance fluids.

1:45pm Being here at Children's, and on this floor is at times, emotionally trying, tiring. The people you come in contact with are here for a reason, something is dramatically wrong with one of their beloved children. While we are blessed that Seth is getting better, two doors down is Tyler.
Seth and Tyler were down on first floor PICU at the same time. I (Sara) met his grandmother there. He contracted meningitis and it destroyed his brain. Last night I was talking to Tyler's grandmother. She told me they were going to have to let him go. The extended family is coming in to say their goodbyes. We (the families here) are often tired and stressed. At some level we come together as a group. So, when one child doesn't make it, we feel compassion for that family's loss. Our hearts reach out to Tyler's family in their time of grief, we grieve with them.
On the other hand many more children have gone home to continue their healing journey there, and thankfully, joyfully, we send them on their way--if only in our hearts. As we hope too that one day soon Seth will play in the sandbox, chase Blizzard and carry her, water the plants, and build wedgit towers and plow them over with innocent fanfare once again.

12:30pm Seth has already put out 40cc since midnight. He did two walks down the hall and sat up playing a couple of games of Mr. Mouth (where you flip flies into a frogs mouth).

7:00am The Cardiologist team came in. Seth's output from his tube was 60cc yesterday. They measure output from midnight to midnight.

10-15-09

6:00pm The Cardiologist team :Dr. Overman, Dr. Sutton, Dr. Rios, and Leah Zupancich (physician assistant) came in this evening. The tube is not coming out soon. Maybe Sunday and then he will need a few more days to determine if he can manage with just oral diuretics. He enjoyed shrimp and noodles from the Tea House and Papa and Nana took him for a walk. We played with Thomas the Tank engine, then back to the room. He threw up a bunch of phlegm and then felt great and had more dinner. After we gave him a sponge bath Papa went home.

3:00pm We (Erik, Steff and Seth) just finished a long walk to the end of the hall and played with Thomas the train while standing up and walked back. He didn't fuss too much.

7 am blood draw. They had to poke him to take blood. More than just a finger prick this morning. A little breakfast burrito and hash browns make it ok.

10-14-09

7:00 PM We ate 2 chicken strips some French fries and other things. Right after we stood and played rings for a little while. He didn’t really have a lot of energy, and the IV’s and other things were running so it made it hard to walk around. So Seth climbed in bed and we played push daddy off the bed to make his legs work really hard.

5:00pm Changing of the caretakers. Steff and Erik are here. Erik will stay the night and Steff will head home later this evening.

11:30am OT and music therapy showed up at the same time. They took Seth to out (walking) to the main hallway and worked on motor skills while singing. Another little boy was there also.

9:30am Seth and Nana went for a walk down the hall where he found a Tomas the Tank Engine toy to play with. He sat in a chair with out help for a 1/2 hour. While walking back to his room, he found a candy bowl at the main desk and rewarded himself with some M&M's.

8:00am Rounds were done and Dr. Sutton came in to get a listen of Seth's chest. The tube is not coming out. Although the output was 85cc, they want to give it one more day. Chest x-ray looks good.

7:30am Seth played a little with Nana and Papa last night and at 10:00pm, he took his melatonin and fell asleep until 4:00am when he wanted a drink. Back to sleep and pretty much slept through getting his chest x-ray.

10-13-09

2:00 pm PT came and we walked to the rabbits and made them go around. He had to stop and rest on the way there. He had not taken a nap yet and I think he was just warn out. A little while after that music therapy came by and he was so tired he didn’t want to get out of the bed. They read a book and he pointed at different objects for her. He seemed to enjoy it but he always wanted to lay down because he was tired but we had him sit up.

7:00am Nurse Amy and I weight Seth and the weight didn't seem right. He would have lost another kilo so we reset the weight on the bed. Seth is down only 1 tenth of a kilo (a quarter of a pound) since Thursday.

Nana stayed with Seth last night. His breathing is in grunts unless he has been knocked out. The oxygen monitor was set for 86 and it was going off constantly. Nurse Amy set it to 83 at about 2:00 am so I finally got some sleep. At 4 am, Seth was thirsty and wanted me to sleep with him. 6:30 am Seth got his x-ray.

10-12-2009

5:00pm The day has been quiet. Seth had OT and PT and a sponge bath. He wants another one. His weight is down a kilo, which is about 2.2 pounds. He was skinny when he came in and with his stomach shrunken it is hard to get enough calories in him each day. On the good side, he doubled the amount he walked today over yesterday. His tube is still in. It put out 130 millimeters yesterday and 60 so far today. He has to be under 100 to have the tube removed. So, he will have it at least another day. X-ray of the chest cavity looks good and his lungs keep improving.

10-11-2009
3:30pm He's still asleep. Oxygen saturation is good, we're concerned he'll be up all night, weighing against the benefits of --as the commercial says-- deep restorative sleep. His left IV hand hurts when the lasix goes in. Nurse steps in to reduce the infusion rate to half, he still feels it. Wonder how long this IV is going to last.

12:30 Turn lights on, open the shades. RT is in to give him the Mist. Reluctantly Seth awakes drinks more apple juice. He wants a bath, okay, walk and ride first. Before leaving, let's order lunch. Toasted ham and cheese sandwich, mozzarella sticks with dipping sauce. hash browns, and some melon with cottage cheese--he certainly sounds hungry and ready to eat. Might be here when we get back. Measuring our enthusiasm against his decided lack thereof, we turn him bed, lower feet to the ground --detach or bring along the umbilicals--and we're off for the 25 foot walk to the wagon, Nana strategically placed at the far end of the hall. Then out for the canonical spin, to the walkway over Chicago avenue overlooking downtown, and a visit to marble roller-coaster rube-goldberg machine that he likes to watch. In about 45 minutes we're back to the entrance of the IMC--Intermediate care unit. A long, reluctant walk back to the room. Whew, that wore him out. Upon returning. lunch isn't here--humm maybe we were only gone 30 minutes. While waiting we heat up some left over chicken noodle soup. He drinks apple juice but wouldn't touch anything else until Nana happens on string cheese. The gates open, several pieces of string cheese are followed by a half dozen teaspoons of noodles and soup. Lunch arrives, Seth doesn't want anything at all. A last we get him to eat half of a hash brown cake. In a few minutes he's drifting towards sleep, a couple of diaper changes he's snoring fitfully.

11:30am Sara is in, Seth is napping, snorting, fitfully. We're concerned, of course. We would like him to be up and at 'em. Not right now.

10:15 Morning rounds with Dr. Overman, Dr. Gremmels and Dr. Wright. Progress is being made. Dr. Overman changed his tube dressing. The IV stays and antibiotics until the chest tube goes. We think the pneumonia antibiotics stop today though--maybe his stools won't be so watery. We can hope. Discussed with them the need to reduce or eliminate the day use of Methadone. Also, to insure that care-givers orders for Potassium Chloride "salt" can be leniently, leisurely given. That is, given over a several hour period, not the 30 minute window insisted up last night. General agreement on all points.
Dr. Wright, (paraphrasing liberally) don't hesitate to call. Use the chain of command, and not to mix it up with those at hand. (The staff care is generally excellent, and the issue here is following Doctor's orders to letter. So we need to work with the Doctors so staff can have the flexibility and not be draw into cross-purposes.) Sometimes this is tough when the at home team is stressed out from this and all the other issues pulling at us.

8:30 Seth, "I'm itchy", can you say that again, "I'm icky." Sure enough he filled his diaper to overflowing. So a major clean-up, new sheets, diaper and so on. The X-ray folks show up, and get a "picture" of his lungs.

6:30 AM change a bm splatted diaper. I (Peter) ask him if he had is X-ray. He says yes. I am surprised, did I sleep through that commotion? Later I find out not yet.

About 2am he fussed a little, tried to give him grape flavored Tylenol orally--that's not "gonna" fly--rarely have I (Peter) seen him dig in his proverbial heals. Okay, then via suppository? He shakes his head yes. Twenty minutes--maybe not that much--later he's fast asleep.

Midnight the RT shows up to administer mist (they show up at 4 hours intervals, even though we haven't been noting that here.) He rouses enough to lift his head for the mask and dozes off before it's finished. Don't know if it's a combination of exersice and drugs, he is sleeping better than the previous two nights.

10-10-2009

8:00pm He's getting his "salt" after dinner with two bites of chocolate ice cream. The Methadone for pain put him under briefly. 8:15 He's awake enough to take without fuss his melatonin. Steff and Erik are headed for home, I (Peter) am here for the night shift. About 10PM after watching Cars he's tired, a little itchy, but ready for sleep. I ask if he would like me to sing to him.. Yes. So I sing for 5 or ten minutes. The choppy breathing becomes smooth, regular and he's out.

Midday Steff and Erik were on. He walked from the room to his wagon and went for a wagon ride.

12:30pm Dr. Gremmels came in and said that the telemetry that Seth is hooked up to can be removed this afternoon. He will put an order for a different pain medicine to get Seth off the morphine. This one will have a longer cycle of 6 to 8 hours so that the pain will stay more under control. He and Dr. Overman suggested adding melatonin to help Seth sleep. Seth has been catching up on sleep. Before he fell asleep he was wanting a bath. That will be part of this afternoons schedule.

10:30am Dr. Overman came in. He believes that the chest tube can come out tomorrow. Seth's chest xray and echo look good. The biggest challenge now is getting him up and moving.

Seth slept from 9:30pm to 2:00am. Then he was up and agitated. He watched a couple of the Scholastic Book series movies and by 4:00am Nana decided to have him get a quarter dose of morphine. By 4:30am he was asleep and slept to 8:30am. He ate very little breakfast and then took a short walk and a wagon ride.

10-9-2009

5:00pm Steff and Erik came back for a few hours and brought a ring toss game. Seth had fun tossing the rings and trying to get them in their box. Jocelyn and Dr. Gremmels stopped by to tells us that the ultrasound looks good. So, mostly, we are just waiting for the chest to stop draining.

4:30pm It was a relatively quiet day. Seth and Daddy got very little sleep (Daddy only an hour). Seth took a morning nap and was out of sorts when O.T. came in. Nana took him for a walk and by noon he was asleep again. He got up just in time to be fed a little and be cranky for P. T. At 2:30pm he got an ultrasound and was very good. Then Nana got shoes on him and off for a walk to his wagon and a ride around the hospitals. On second floor there is a large moving 'sculpture' of balls which are carried by a hook and chain to the top of the sculpture and let to ride the rails down. Papa came by after work and helped Nana get Seth to walk back to bed when the ride in the wagon was over.

1:00am An iv was put into Seth's left hand. Then he was given a bit of morphine. He gave Daddy big smiles and told stories. Later he asked for more morphine.

Last night about 9:00pm Erik noticed that Seth's right hand, which had the iv in it was puffy. The nurse agreed and called to have a new iv put in.

10-8-2009 An all around quieter period, light at the end of the tunnel?

7pm. Dinner time, almost normal, Pepperoni pizza, corn and peas. Erik is here to feed him. Still having trouble with itching the scar near his throat, even though it is now covered with a plain guaze bandage. He's been off blow-by oxygen all day, he's been in the 90's all day. Still a fair amount of lung clearing needs to happen.

Papa Peter stopped in about 4pm, Seth, Sara, Peter, all took a well earned nap. Then Nurse Cindy came and helped us move all his stuff--the vacuum reservoir, the blood saturation monitor and the 6 lead hook up for ekg--into the red radio-flyer wagon for a little stroll around the hospital. The walkway across Chicago avenue reveals a commanding view of the Minneapolis Skyline, closer up the exterior construction elevator (visions of Bob the builder), and a small roof-top garden. When he came back he had a bite of popsicle and they drew blood from his left finger.

At 2pm two physical therapists came. They played with balls and other games. Seth started out crabby, Sara left, the PT's played. By the time she came back Seth was glad the Pt's came.

For Lunch he nibbled.

Just before noon three get well balloons and a toy "Dozer" dog arrived, courtesy of Tim and Ann who live across the street from Sara and Peter. Dozer is about a three year old Golden Retriever. Seth loves to go over, throw the ball and have his face licked by the ever affectionate and over the top enthusiastic attentions given by Dozer. "Dozer" napped with Seth this afternoon. Many Thanks Guys.

Seth colored with a wide range blue and light blue markers on the art tray that Sara brought in.

Sara and Seth made widget towers in bed. At first he wasn't interested, but then built one tower and helped clean up.

Somewhere in here Nurse Jocelyn and one of the other Dr. Gremmels came in. They looked just above the scar near his throat, it looks very red and broken out rash. It looks like it may be the start of an infection. They left it open to the air. However, he wants to itch it.

At 10am the Occupational Therapist came in. Seth sat on the floor and he got to throw balls that stick on the walls--crabby, but happy by the time it was all over. She was there for about 45 minutes.

7:00am rounds--they discussed Seth, but didn't come in the room. Dr. Overman came back and talked with Sara. Dr. O was so so on the x-ray, and was concerned that Seth was not off blow-by oxygen--he would like him to be off by now.

5:30am x-rays.

He woke up about 3:30 am. He watched Madagascar, with Nana in bed with him.

10-7-2009

8:15pm This afternoon Jocelyn helped us to understand that although Seth has this rare blood disorder, he is on the high side, meaning close to normal. Unless he has surgery or other major trauma, he will clot only a bit slower than normal.

8:00pm Physical Therapy came in and got Seth to walk to a wagon and he was pulled around the ward a couple of times. During that time he was receiving red blood cells through his iv. It was a two hour infusion. He was 10 minutes short of completion when he broke out in a red rash all over his body. Jocelyn came up and got him Benedryl. He was very agitated during the afternoon. It was decided that his neck iv needed to come out as it was not working correctly and was bleeding. A new iv has been placed in his right hand. He had some morphine to keep him calm while the new iv was put into place. With a bit of dinner in him and Lelo and Stitch as the movie for the evening, he is dozing.

12:00pm We now have a better idea as to why Seth continued to bleed beyond expectations in surgery. It seems he has a Factor VII Deficiency, which is an inherited bleeding disorder. It is a very rare disease and is not well known, even among health professionals. It is caused by an abnormal gene. One of the genes on chromosome 13 has a defect. Unlike Factor VIII Deficiency (hemophilia A), this can affect girls as well as boys. To be affected, both parents must be carriers for the defective gene, and the parents probably do not show symptoms. The chances of getting this disorder is 1 in 500,000 people. The severity of the problem depends on the level of Factor VII in the bloodstream.

Before surgery Seth's blood factors were well within the normal range. It wasn't until his bruising from the surgery wasn't healing and bruising in other parts of his body where there was no trauma showed up that he was tested for the Factor VII. Often a boy with a severe case of Factor VII will be diagnosed when they are circumcised. Seth had no problems with that procedure.

The future for Seth is: He will need to be seen by the Hemophilla and Thrombosis Center in the next month or two to establish a baseline level of Factor VII and anytime he has surgery, his drs. must be aware of this blood disorder and have the drugs needed to help his body clot.

We and Seth will also have to learn to monitor his body anytime there is an injury.

9:00am Seth didn't sleep much last night. Erik is very tired.

10-6-2009

9:00 PM new pictures are going up now.

3:30pm Seth is in his private room on 3rd floor. He didn't eat a good breakfast or lunch. His new tube is giving him pain and the tylenol isn't enough. He was given some morphine and he is out of pain enough to smile. Dinner is going down well.

9:45am Seth's new tube is draining well and his chest x-ray looks much better. We have been told he is to move to the 3rd floor today (assuming he had a room). With a bit of breakfast in him, he is fast asleep and snoring. His oxygen levels actually are higher when he snores

Erik's update from last night.

2:30 1/2 dose of morphine, and off to smilesville.

9:00pm With his new chest tube on the right side he is much more happy. He has eaten most of a 6 inch black forest ham from subway. And that is after Nana and Papa fed him dinner. I did notice is that he now has a little bald spot on the back side of his head. Everyone says it isnt a big deal. It is like on the bottom of the scull and inch in from the left ear.... more like where he has been rubbing and sweating. Stress and low on vitamins etc. They think it will regrow soon after he is feeling better.

10-5-2009

6:15pm A bit of dinner in his stomach(rice, egg, and jello)and he is off telling stories about his birthday party.

4:45pm At 2:15pm Dr. Overman started the procedure to remove the pig tail and insert the other one--a large tube, not a pig tail--in the back of his right side. Quite a bit of fluid has already come off his chest (more in 2 hours than in the previous 2 days, about 250ml already.) If this works, they might be able to reduce the amount of lasix and then the potassium chloride. He has come out of the anesthesia pretty well so far. He's eaten some popscicle, a nibble of banana, a nibble of an animal cracker and squash--he says it tastes good. After not eating since 8:00am. We're trying to start slow... Nurse Jane suggested we order him dinner.

11:45am Rounds were done and Dr. Overman told Rick and Nana that Seth's chest tube would be removed, but a new tube would be put in the right side of his chest. Jocelyn Berbee explained that Seth has subcutaneous emphysema. The sound and what we feel in his chest is called crepitus. His pneumonia is doing better.

They stopped his food and water at 8:00am and he did not eat a good breakfast so now he is crabby and hungry.

He had his first occupational therapist and physical therapist visits today. The occupational therapist will work with his upper body and the physical therapist will work with the lower half. The occupational therapist was able get him to walk 20 steps and put him in a wagon for a ride around the ward. Rick pulled the wagon. Seth then played with some toys. When the physical therapist came, she just got a crabby kid. She did a range of motion assessment and determined that his flexion in his legs was good. They will be back on a daily basis.

10-4-2009

Grandpa Rick's update for today. He was here from 9:00am to 6:00pm

Seth had diarrhea 3 times (caused by antibiotics) and enjoyed about 3/4 Chef Boyardee pasta dinner but then vomited. He was given 2 meds orally (chased by apple juice). One for upset stomach, one to cause him to pee. On the 3rd time of diarrhea, he peed through the diaper onto Grandpa Rick (who probably did not put the diaper on very well). We watched the Lion King & Muppets, and Treasure Island (twice). Seth's stitches pulled out of his central iv line. He peed through all the bedding (ha!, missed me this time!) and then ate a full piece of toast with pad of butter, full bowl of chicken noodle soup … paced more slowly this time.
Seth spent most of the day sitting on my lap, which was a treat!

8:00pm or so..Papa's update.

Seth drifted off to sleep about 7:30 and is still sleeping through the RT…she’s a little early at 8:15 should be 8:30.

While the cough is still strong and productive, his color is good. Nurse Jen says his creptius is better. Also, nothings come off his chest drain tube for the past 48 hours according to Jen.

He ate like a bird, a 36ml of tomato soup, a three or four bites of mac and cheese, same for cottage cheese and five small pieces of cantaloupe.

On the other hand, if it stays down, that’s good.

Had him sitting in my lap went my pant leg got warm. Having been forewarned by Rick’s experience, we got him back into bed and changed the wet diaper.
None got on me, but he’s still running loose.

7:00pm Papa Peter joined Grandpa Rick just in time. Seth needed to have his iv line in his jugular vein restitched in. It was two stitches and he squeezed their hands while they tried to distract him. His oxygen level is down to 85 so they are having to keep the blow-by oxygen going. At 8:00pm the respiratory therapist will work on him. Tomorrow's x-rays will tell if his lungs are getting worse.

10:00am Erik and Steff just called as they are leaving the hospital. Grandpa Rick is in town and doing the day shift. Papa Peter will join him this evening. Seth had a good night.

The cultures have come back on the cells that were collected from his lungs and windpipe. He has a staph, strep, and the last one is a gram negative. The dr. on duty said to just call it pneumonia. His blood clotting factor is still a little slow. That may be because of the surgery.

Seth was very talkative this morning. He was telling everyone how he was going to be a Tin Man for Halloween. Mommy is to be Dorothy, the baby is to be Tigger, and Nanna and Pappa are to be a lion and a bear.

The plans are to pull his chest tube tomorrow and watch him (assuming Dr. Overman agrees) and Seth will begin physical therapy. I will be happy to have someone else push him to walk.

If all goes right, he might be in a private room on 3rd floor on Tuesday. But we have learned not to hold our breath.

10-3-2009

About 10:30pm last night, I (Sara) left the hospital. Seth had a pretty good day. There was even 5 minutes or so where he bounced his head to music like he use to do.
He was helped out of bed and asked to stand for about 2 minutes and walk 3 steps. He is very weak and cried doing it. His appetite is good but is still throwing up a bit. The antibiotics have made his stools loose and now his butt is sore. After his walk he slept in my arms for an hour and a half. This is the most he has been upright since the surgery.

8:30pm Seth decided that he really didn't want the chicken I ordered for him and wanted my veggie burger instead. I of course, don't want his chicken. Nurse April fed him part of my dinner and got all of his 'salt' into him.

5:30pm Seth is being given another diuretic. His chest x-ray was a little "wet" in the chest cavity. He has to pee off more fluids tonight. When the chest cavity has too much fluid the heart and lungs have to work harder. He won't be able to go home until that issue is stable and he can just be on lasix for maintenance. That is what he was on for approximately his first 2 years.

5:00pm Seth has had a quiet afternoon. Rain and I (Sara) rubbed his arms and legs with cream over and over again. He actually smiled for Rain. After Rain left he got a bath. The hospital is strict on their 4 people visit limitation per day. Peter can not come to the hospital today. That makes it a bit harder for me in the evening as I can't leave for dinner. I will have to eat hospital food tonight.

There is talk that the hospital may implement a 2 person per child per day rule. That will make our shifts 12 hours each. It is a good thing Seth is as far along as he is in recovery. If that had started a week ago, it would have been hard to give him the care he needed.

4:30 am Seth just ate what seemed like a lot. He had a microwaveable chef Boyardee meal. Okay it was only 7.5oz. But still that's a lot. He also had almost 4 oz of juice. Still working on trying to get him to sleep. Erik is still sleeping, which is good, he needs to rest. another thing to add Seth just had a BM.

4:05 am and still awake. He has labs at 5 am and anytime now the Respriatory specialist should be here anytime now. He is also now getting his antibiotics.

4 am Still awake... Can't get Seth to sleep. He is watching Bob the Builder. I (Steff) have no clue why he will not sleep. I give up. I should wake up Erik soon. Nothing really new to report on Seth. Oh I forgot.... the tomato soup did not stay down.... It came back up at shift change. So in other words at 11 something. Other then that nothing new.

10-2-2009

10:50 pm Seth has spent the last 40 min or so sleeping in my arms. When he wakes up he wants me to sing (badly) the song that starts off "hush little baby don't you cry", but I have no idea what the words really are, so I am making up a bunch of stuff.

I realize that I need a bit more sleep as well after telling my brother something that wasn’t true that somehow got to be true in my brain. Nothing big, but none the less not something I would normally do. Sorry for the little confusion.

More pictures should be coming soon. We just need to coordinate our times, Peter/Sara, Steff and Erik so we can compile the pages quick.

8:00 pm So I (Erik) have made it into the hospital and looked at the images. I think mom’s relay of the info was off. In the pictures the issue is just passed the voice box. There will be some scabbing, and his voice will change slightly, but his ability to articulate.

4:45pm He's still sleeping---the most relaxed sleep I (Sara) have seen him have since the surgery. His echo looks good. Dr. Baker said it would be a few more days before he moves upstairs.
They have not determined where the crepitus came from. One theory is that as the air was pushed into his lungs during the surgery a small hole developed which has to heal on its own. Why it developed after about 9 days is a mystery. One possible idea is that the edema from the surgery masked the crepitus and as the water came out of his tissues the crepitus showed up.

1:45pm He's back in his room. He did very well and is now sleeping of the effects. We can start feeding him ice chips in a few hours.

1:30pm At 12:30pm They took Seth to surgery to look at his air pipe. The procedure is called DL Bronch (the name that is on the pictures of his throat) they found no holes and determined that the vocal cords work. there is a bit of irritation/scaring on the vocal cords. Dr. Soumekh stressed that it would take time, (I got the feeling lots of time) before Seth's voice would come back and that it won't be quite the same. Nurse Jane said that she has seen many kids, some who had no voice, and the voice comes back but again, it can take a very long time.

They are now doing an echo on his heart.

11:20am Well Seth was sleeping. Dr. Baker came in and listened to Seth's heart. He woke up in a start and I (Sara) had to pick him up and sit in the rocking chair holding him tight while he scratched my face. It took a few minutes for him to calm down and I put him in bed and he fell asleep again. Then about 10 minutes later, another Dr. came in to change his dressing on his tube. It was dry and really didn't need to be changed at that minute, but hospitals run on a time schedule. So wake him up again and pull off the dressing for a new one. He's back asleep and hopefully will stay that way until they take him for his tests. I feel so bad telling him he can't have anything to drink or eat.

10:30am Seth has had a bath and is sitting up (actually sleeping) in the rocking chair while a Bob The Builder movie continues to play.

Nightly updates from Steff and Erik

5:40 am. Morning x-ray and Seth was already awake and smiling. They didn't put the lead shield over his privates, anyways he is in a wonderful mood. He can only have clear liquids so they can look down his throat to see if there is something wrong with the vocal cords.

4:30 am I (Erik) am happy to report that so far this has been the most uneventful night in a while. Seth has had little coughing fits that wake him but for the most part he is asleep shortly there after. I cant give him any more liquids soon because they are going to look to see if his vocal cords got damaged tomorrow noon time. He doesn't want to take any pain meds either, and he is not in pain much anymore.

1:00am So far so good. it is 1 am and other than a few wakeups sSth has been asleep most of the time. He hasn't wanted to take his last dose of tylenol but he is sleeping well.

11pm Seth has been asleep for a little. New low of 73 in deep sleep. Other than that nothing too intresting to report, which is good we could use an uneventful night.

10-1-09

7:00pm In the middle of all this, did we mention Seth is such a good trouper? Maybe in a few more days, they can figure out what is going on.
When I (Peter) came in about 5:50, he was in the middle of one of the fast-paced heart rhythms--about 130 bpm. Dr. Baker came in and said that as long as he tolerates it, and he is, we'll watch and wait and see. They came in and connected him up with a dozen wires to get an accurate and hard copy EKG. At this point he's looking like a refrigerator that someone took all the pictures off, but left the hangers strewn about his front side.
At that point he was a little warm, call it 100 plus. Then awake to eat a bit of hot dog, string cheese and a carrot, a couple of bites of squash with salt, aka tasteless potassium chloride.
About 7:15pm his heart flipped back to normal rhythm, go babe, go. They came in and connected him up with a dozen wires to get an accurate and hard copy of the good EKG . Nurse Ingrid--here 12 hours, kept saying, when his normal rhythm returns Ingrid was briefing Nurse Erin when Sara noticed, hurray. Good thoughts, prayers and intentions count.
A bit less coughing, periodic, still strong when it comes.
A little time with Nana in the rocking chair, Tigger Movie, and bite of hot dog and string cheese.
9PM, Steff and Erik are here.

2:30pm Seth's heart started "leading" from the ventricles again. Dr. Baker came in and ordered a 12-lead ekg to try to determine if it is a true ventricle lead. His heart rate is about 140 beats per minute. They have put the pacemaker back on him to try to get another ekg with the pacemaker pacing the heart. Dr. Baker thinks the problem is adrenaline in his system and or the infection that is causing the heart to race. The 12 leads were left on so that a technician can take an ekg a few more times tonight. They are especially wanting one when his heart flips back to an atrium lead.

12:15pm First test is over. They stopped his food and did x-ray with contrast material that he had to swallow in order to get the pictures of the food going down the esophagus. X-rays were done while Seth laid on his left and right side and his back and then one done when he was sitting up. There doesn’t seem to be any leaks there.

Tomorrow he is having a scope put down his thorax.

10:00am Seth has been looked at by an Eyes, Nose, Throat specialist. They are going to do a swallowing procedure, so Seth can't have any food for at least the next 6 hours and possible until they look down his trachea to see if the air leak is there. There is a possibility that his vocal cords have sustained some damage or the nerve to them has. If it is just trauma, everything will come back.

The Drs. are not sure if he has an infection and if he does, so far they can't tell where it is coming from But they are treating him as if he does have one.

Because of the unusual rhythm of Seth's heart, they are going to do an echo to see if there is a problem with his heart

Notes from Erik and Steff for last night.

4:00 am Seth has been fairly asleep since 2:10 or so. I think this is the most amount of sleep I have seen him get in the last 10 days and the most amount of non medicated sleep that he has gotten in a long time.

12:32 heart rate has returned to normal... good job Seth!

12:15 am He has been on the drip for about 40 min and his rate is down to 128, but hasn't snapped to a normal rythme. He seems to be tolerating this ok and is still napping.

11:17 Seth is asleep now, no drug yet but his heart rate is down to 138. Before when he was asleep it was 77.

10:50 heart rate is still elevated, and they are going to give him amiortaral (sp) to regulate his heart rate. 5mg/kg. updates to come soon.

10:10 Seth had a good BM, and during that time his heart went juntional again. his clotting facter was slow and they are giving him some plasma.

9:45 Seth had a big coughing fit and his heart went into a funny patter, which I (Erik) believe is call conjugal. W got some tylenoll into him and after about 8 min he coughed again and it went back to a normal beat. The hospital is filling up with H1N1 people.

I (Erik) am starting to lose faith in the medical institution. One nurse says Seth can't get pampers because they don't stock them, and another orders them, and they show up during the shift of the one that says they don't have them. We have to point out how things are getting worse. I may just be worn out.
9-30-09

7:00pm Seth's blood labs shows an infection. They have put him on a broad spectrum antibiotics. It will take 24 hours for some of the cultures to be ready for them to start determining what type of infection he has. X-rays of the lungs look good. There is no way to determine where the leak is. He had part of Peter's burrito and guacamole. So far it is staying down and Seth is asleep.

5:00pm Nana's reading a story to Seth --white mittens. I (Peter) arrived in the middle of a flurry of activity. Late this morning Seth threw up a little of the little he had for breakfast. Moments before I arrived he threw up a bunch of his lunch. This apparently upset his heart's electrical pathway, and his heart rate went to120, and was activating from a different part of his heart. When I looked at him the color of his face was closer to blue gray--after reflection, no so different from any one of us after throwing up. Combined with the rhythm change, we were all concerned.
Long moments, long breaths.
Cardiologist stopped in to look things over. The pacing returned to normal, and she explained that pressure caused by throwing up can cause this kind of reaction--all 9 minutes that it lasted.
We gave him a sponge bath, changed the sheets. Whether he's fast asleep or just playing possum, we'll take it. He's not taking his tylenol. Lips purse close when the syringe is offered. The RT came in and misted him, since he was sleeping (mostly) he avoided the vibes for this moment.
Somewhere in this adventure (shortly before the afternoon throw up) Dr. Overman came in, he and Sara were all but ready to have him move up to the third floor. How swiftly the times change. So, no move today. He's not ready, and turns out there's no room on the third floor. Also, Dr. Overman's off to Toronto, back on Saturday.
Chest X-ray cadre came in, Sara and I left. When we came back, viola, nurse Sam was giving him medications, including tylenol. His color dramatically better, some rose back in those lips and cheeks, our little grandson is back.
Some of the color is gone, he's coughing, vegging out as he watches kids TV, just about the way he's been all along. Two steps back three steps forwards, so it goes.
Looks like his white blood count is up a bit. His X-ray shows no obvious point of leakage. We have given him a mild laxative (mixed with some cranberry juice) to see if that will allow him to start moving things through again.

11:30am Steff and Erik had a rough night. Seth didn't want to sleep. He is being woken up every couple of hours for something. Dr. Overman removed the older tube from Seth's left side. He is not as puffy but when you rub his back or chest you can hear this crinkly sound. He slept in my (Sara's) arms twice for about 15 minutes and then back to bed where he gets quite agitated. He threw-up a small portion of breakfast and after Nurse Jane and I cleaned him up he fell fast asleep. No word as to our moving up to third floor.

5:25am More nightmares and now he is watching the Bee movie.

4:30 am Back to sleep after a long nightmare session. We had to make funny faces and shake our fist at the monsters. I (Erik) think it will be a bit before the bad dreams go away.

3:30 am Seth got a small dose of morphine that took the edge off and he is finally asleep.

3:00am Seth had a bunch of cottage cheese, milk water, and is holding my (Erik's) hand trying to sleep.

2:30am Erik is up and now it is Steff's turn to head to bed for a nap. I (Steff) can't believe that it took three tries to get him to take the tylenol.

1:30am His temp is good. Erik is still resting. it's 1:30 am and I think he has slept for about 1 hour max. this is counting all the tries. He just got his dressing changed on the side tube..Se He now just started Toy Story. I (Steff) wish that I could give him something to sleep.

9-29-09

11:30pm Tonight Seth is just fed up with all the wake up calls. So far he has gotten about 45mns if that of sleep. I (Steff) believe that nurse that we have for the night shift it's her 1st day at the PICU. Not too happy about that. Seth was low on potassium. So he is now getting an IV of that. At Midnight he will have the respiratory therapist come in and wake him up. Seth has been wanting a lot of love.

7:30pm Earlier the RT stopped in (5pm?) and gave Seth's right upper side the vibes. Also, a nebulizer to help open his lungs--he doesn't like the feeling on his eyes, so he squints them closed. RT says the nebulizer is easier on the heart than some of the others. Don't know if he's playing possum or actually drifting towards sleep during the treatment--I (Peter) rub his foot as a distraction.
Evening rounds, Dr. Overman and company came in to change the dressings all around; large and small chest tubes, the drain incisions for the front chest tubes (healing nicely IMHO) and the Atrium wires for the pacemaker--not pulled as yet--necessary, no fun when the tape pulls from tender skin. Grandparents distracted him, and a little Toy Story too. He takes it better than some would.
Coughing frequently, somewhat agitated, tylenol is working, but not quite enough to give complete relief. This is hard for the caregivers, he squints his eye's closed, but doesn't really sleep.
Scooped up into the rocking chair he slept in Papa's lap for for 15 minutes--you only count the minutes he's gently snoring.
A good dinner, mainly some cooked carrots--yes he likes them--and a nice ham and cheese on white bread, he ate the better part of half. Hard to eat when you end up coughing so often.
Toy story over, he's resting in Nana's arms in the rocking chair. I (Peter) put the Oxygen tube near, his uptake went from 93% to 98%--this crepitus is hard on our little guy. He's not learned that bad habit of expectorating which at this time would be the best thing since he's swallowing phlegm which can't be good. In Nana's arms, certainly the most restful I've seen in a some time. Maybe the gentle sounds of Enya are providing some soothing rhythms. If not for him, then for us. Was that 20 minutes--sure goes fast. He can't find a good spot, so back into bed trying to settle down.
It's now 8pm and the RT is back, vibes and nebulizer. Steff and Erik just so Nana and Papa are checking out.

4:30pm Lunch was a bust. He very little tomato soup and none of his beans and rice. He is refusing to take any of his liquid meds through a plunger. He is uncomfortable and moans unless he is coughing up phlegm which he won't let us suction. We have been trying to distract him with movies and that works for a little while. Otherwise, his treatment goes on as it has for the last few days..

10:15am Seth had a rough night. The subcutaneous edema has spread and he is very uncomfortable. The first drainage tube is not being removed. Possibly tomorrow. Seth will not be going up to 3rd floor today.

On the good side, he ate scrambled eggs with cheese, toast and butter and some chocolate pudding. The pudding hides the potassium chloride, a medicine he dislikes as a liquid (adults hate it also). Now in tiny beads, it is easy to hide in the pudding. It looks like salt. He is aware of what is being done to him and has started to refuse to take his meds. We are going to have to find interesting ways to get him to take everything..

Last night's update from Erik and Steff.

7:30am Seth's chest tube the big one or also know as the old one should be coming out today any time. He still has air/liquid on his chest.. On his right side you can't see his rib cage; which that is rare. I just found out it is air. On the left he still hurts, don't know if it's air or liquid still. He was also given something by IV to help his neck IV from coagulating. We don't want one on the feet or hands.

5:20 am Both the central lines in Seth will not draw blood anymore. It will not be long and we will check for swelling.

4:15 am Erik is back on duty. Seth has still been moaning on and off, but mostly on. The RT came with a nebulizer as usually 4 hr schedule, but no thumping because Seth needs sleep.

1:20 am We changed one diaper as it was getting full. I bet another will be full soon. He seemed to wake up while he was peeing and was in some pain. We did notice that during the morphine sleep his heart rate did get down to 77 bpm.

1:00am Now with the lasix. Hope he goes pee soon! I have a strong feeling we will have to change everything on the bed once he goes.

12:44 am The Respiratory therapist came and gave Seth something to break up all the stuff in his chest. He is sleeping still.

12:30 am Well Seth has some water weight. He will be given lasix at 1 am. He has not peed since about 8pm. So that's why he has the water weight. Morphine is being IVed to him. He fought the tylenol again. I asked him why the didn't want it. He told me because he likes cherry better and not grape. I'm not buying it, but I asked. Erik is napping. I (Steff) am here with Seth, who is now fast asleep.

10:30pm Seth has been fitfully sleeping tonight. His O2 levels were going low due to gunk and shallow breathing. We have turned on blow by O2 for tonight. Oh, the low level O2 is 83, but not even a 1 count and it goes to 93. So far his slowest heart rate has been 82 BPM..

9-28-09

7:45pm He's a bit agitated and getting a sedative to help him relax and perhaps sleep for more than 5 minutes at a go. It's a tough go, the Lasix goes okay, the potassium chloride tastes yucky--Sara will try mixing it with some grape juice.
Earlier Dr. Overman stepped in, evening rounds. His plan is to remove the larger chest cavity tube tomorrow. With luck Seth will move to the 3rd floor, a private room, away from intensive care. The smaller "pigs tail" drain has to say. The problem "crepitus" is "benign"--he can't go home with it! I told Dr. Overman, Sara and I are happy, even if Seth (right now anyways) isn't.
Before that, he ate some tomato soup. He surprised us by asking to take his latrine at the commode, and did so--not much, but enough so we know the plumbing works. So at least some of the toilet training is holding--we thought we might loose it all.

4:40pm Seth is up and had part of a popsicle, some crackers, cantaloupe and a rock in Papa's arms. Now a little apple juice and cantaloupe... just a little bit--let's save the projectile word snow balls. A couple of good coughs, brings up the yuck. So far so good.

1:10pm Dr. Haun started putting in Seth's pig tail tube. What he has is called crepitus (Crepitus is a medical term to describe the grating, crackling or
popping sounds and sensations experienced under the skin and joints.) The procedure was over by 1:30pm. Dr. Haun believes that Dr. Overman will be removing the other chest tube. The air seems to be coming from a leak in the lungs which will heal on its own.

12:25pm The surgery is for changing and or adding another tube. Seth is now puffy across the back as well as around the stomach. They are late in getting to him and he is being so good. I have to keep telling him that he can't have food or water. I ...wish he would fall asleep. He has taken about 6 10 minute cat naps.

11:40am Seth just got a sponge bath and his hair washed. Now he fast to sleep. It would be nice if he would stay that way until noon. It is hard to have him ask for water and we can't give him anything.

9:10am Seth was given a sedative to help him sleep at 8:30am and by 9:00 am he was wide awake again. It is going to be a long 3 hours as we can give him nothing to eat or drink.

Surgery is scheduled for noon. Dr. Baker came in to check on Seth. He is doing the rounds for Dr. Sutton this week. We haven't seen him since Seth was born. He did the rounds for Dr. Sutton when Seth was a week or so old.

Last night's update from Erik.

Steff and Erik stayed the night.

I am still a little worried about his voice. He doesn't really talk and when he does it doesn't sound like him. But everything else seems to be coming along, so this... may catch up too. It could still be the tube in his chest.

Seth didn't sleep much and at 1 am sent me off to Abbott Hospital where there is a McDonalds to get chicken nuggets. The kitchen in Children's stops with hot food at 6:30pm. I am a bit annoyed at that as the patients as well as family operate on a 25/7 hour schedule and need food at all hours.

About 4am Seth had a large coughing fit which developed into vomit. After cleaning him up we noticed that his chest was inflated with liquid on the left side. There is also some air now down by the belly.

6:15 am The doctor on call did an ultrasound and determined that it was not fluid but air. The air in his chest is expanding, and the chest tube is not taking it out. They will be discussing with cardiology on the move/removal of that tube.

Seth is getting his chest tube changed out for a more spider like air drain tube. He doesn't seem to be in anymore pain, just a little more sensitive on his side. He is getting his chest tube changed out. for a more spider like air drain tube.

9-27-09

11:30 AM Seth has been really awake today. He has been sitting up in the rocking chair by himself. We are trying to keep interacting with him to help him get back onto a normal schedule. Now that things have smoothed out a bit we are adding pictures again to the all pictures page, and the surgery pictures.

10 am Dr. Overman came in and removed Seth's pacemaker. There is a little air left to get out of his chest cavity. The plan is to move upstairs Monday.

8:00 am When Dr. Sutton cam in this morning, we asked him what the part of Seth's surgery where the ascending aorta is positioned posterior to the pulmonary artery is called. It is the Le Compte maneuver.

12:30 am Seth back asleep after 12 am cares. He, for the second time, has basically asked for a suppository. Is it bad when he knows what we are talking about by just saying it? A little bit of chest thumping and all the nightly blood drawing has really tired him out again.

9-26-09

9:00 PM Seth is really awake. Grandpa Rick got a good amount of time with Seth in the chair reading pop-up books. He doesn't last very long until he is tired. For the most part, he seems stronger than before. He will take a full glass and get it to his mouth without much issue at all. The shakiness seems to have almost vanished. He has a grunting sound to his breathing that seems to be part of needing another BM.

7:30pm While more active than yesterday, the word might be low-key today. Seth's been awake off and on. Sat twice in the Rocking Chair with Peter, who rocked and sang quietly to him for the short while he could stay--then, uncomfortable again he is scooped gently back into bed. The Respiratory Therapist came and worked on vibrating his lungs and suctioning the mucus. Clearly he's uncomfortable, his core is warm, his extremities cool. He, mostly, allows a blanket on his legs--something he doesn't brook as soon as energy is available to kick them off. The Nurse read to him since he woke up shortly before Peter and Sara returned from dinner about 6pm. It's 7:40 now, he's turned on his right side (the drain tube for his lungs on the left makes that side a tougher deal.) A quick google search reveals accumulation of fluid in lungs post surgery is common and is generally worked through over time. We've seen his oxygen saturation as low as 91%, but primarily in the mid 90's--it's 96% right now.

4:00pm Peter had a chance to hold Seth. Tony Cherne stopped by for a short visit. Seth remembered Tony and what Tony keeps at the office for when he visits. CHOCOLATE!

3:00pm Seth just finished a half an hour sitting up in Sara's arms. I moved his arms and legs. It's time to help him start rebuilding his strength. He's fast asleep.

12:50pm Dr. Overman just was here and said that tomorrow Seth is coming off his pacemaker. He is to be weaned off the oxygen and by Monday morning he will be moved to a private room on 3rd floor.

12:00pm Seth has been given another tylenol suppository. His chest has been thumped on and he got a few good coughs and fluid from his lungs. He has fallen back to sleep.

10:10 am Seth is now in a deep sleep again after having some fussing about not being able to draw. We are working on getting him to do various activities to bring his strength back in his arms and legs because he has been at rest for so long. In this deep slumber his heart rate so far has reached a low of 87 BPM.

9:00 am Dr Han has orders in to wean Seth off the supplemental oxygen. He is currently now at 4 L/hr at 50% O2 and holding steady. His ekg leads have finally been changed.

8:30am Dr. Sutton has stopped by and has turned his pacemaker down to 70 in the hopes that he will not need it at all. The X-ray still shows a little gunk left in his lung, but it seems to be clearing up.

7:30am After a good BM Seth is getting his first sponge bath.

3:15am Seth had a good cough and was off the pacemaker for a minute or two and then back to sleep and the pacemaker is again working.

2:00am Seth dropped into a deep sleep and the pacemaker had to kick in.

9-25-09

10:10pm At about 10 pm Seth was given Tylenol in a place it should never be given. This to help get a bm soon. This was because of how his system slowed down yesterday.

9:25 pm Seth got Lasix orally, and has a food drip going again. Hopefully we can get him back on real food and awake again.

8:10 pm Seth got some good chest pounding to beat out more junk in his lungs. They have taken him off of all his drugs. I hope he will be getting ready to move up out of PICU. Rick has joined the troupe for the weekend. Sara and Peter have gone home for the night.

6:50pm Sara has had some concerns over Seth being asleep all day and his oxygen levels being down. The two on call Drs. came in and then Dr. Overman. He ordered another chest x-ray wondered why Seth was put on sedatives every three hours starting a 1:00am. He has taken Seth off the sedatives and we will wait to see the next x-ray. Seth is unable to get deep breaths with being on the sedatives.

3:45pm A significantly more restive day than yesterday. After the chest tube was moved down to the middle of his chest the output went up a lot. He's still has air between the chest cavity and outer skin layer, i noticed some in his left fore-arm, none in the bicep area. Dr. Overman stopped in about 3:30, said that the x-ray taken this afternoon shows progress. He is recommending patience.
The hard-fought skirmish over oxygen tubes in the nose has been reversed. He's so restive and compliant he's not trying to mess with them at all.
All IV drips have been removed. Another step towards the good.
Also, sometime this afternoon the pacemaker was turned down to 90--it will kick in below that that point. Since that time he's held his own for the most part, no higher than 105, right now about 94 and he's snoozing pretty well.
Respiratory therapist came in and vibrated his lungs, which improved their sound. The nurse would like to do some suctioning before the therapist leaves at 7pm.

11:20am For two minutes, Seth was able to hold a heart rate that was higher than what the pacemaker is set at, which is 90 beats per minute. He's awake and eating sweet potatoes.

9:00am Dr. Overman pulled some of the chest tube out of Seth. The tube originally ran from the bottom of his ribcage almost to the apex of his heart. It was sutured in and that needed to cut and pulled out. There is now about 11 centimeters of tube in his chest which had to be sutured in. He also removed the twp pacemaker leads that ran to the ventricles. These needed to be pulled out one at a time as they were stuck.

8:30am Seth's chest tube needs to be moved again. They have given him some morphine for the pain this will cause. When Sara touched his chest it felt like a sponge on the left side. There is a fluid and air build-up again.

His pacemaker has been reduced to 90 beats per minute and they have taken him off for a few minutes and then back on. He won't be moving to 3rd floor until the chest tube is removed.

8:00am Last night Sara and Erik got a chance to hold Seth. He has started to go through withdrawal and wants to be held for comfort. He was able to eat a little macaroni and cheese, but late in the night he needed a suppository and finally had a bm. With less gas he slept well. Steff and Erik got sleep in the hospital and Sara and Peter did so at home.

9-24-09

5:00pm The respiratory therapist showed up, vibrated his lungs, no suctioning--he's got a "productive cough" that is reducing the congestion in his Lungs. So no icky suctioning, that doesn't mean a guy has to like it.
Afternoon Rounds; Doctors Sutton and Overman return. Dr. Sutton released him from all his heart pacing medications--they can be removed. Done. Now the right foot IV can come off--oh, it was stitched in place. Stitches and IV tube out, site cleaned up, the right foot is free. We are happy for Seth, he is low key--still doesn't like the oxygen tubes. The lasix is still at 12 hour intervals. The evacuation tube in his left lower rib cage must stay--at least until tomorrow's x-ray. Dr. Overman tested the pacemaker, off about 80 bpm, and then turned it back on. He's fairly confident no pacemaker will be needed (paraphrasing here.) Eventually, they will turn off the pacemaker for an extended period of time and just watch what happens.
Seth's eating well. A little banana, and the first two plastic "tins" of squash are gone.
Dr Overman remarked, 'What?... are you punishing him?'
Sara shot back, 'He likes squash and broccoli!"
Dr Overman, broad mischievous smile, 'Just kidding.')
The wall of infusion pump electronics is winnowed down to just two pumps. It's starting to look a normal recovery room instead of the bridge of Star Trek's Enterprise.
Minor revolt, Seth's awake enough and the oxygen tubes are irritating enough (he's got a raw spot under his nose) he doesn't want them there. All bargaining failed. Respiratory therapist to the rescue. She ginned up an air tube that can be blown near his face. Between the minor sedative and a lot of coaxing he's settled down. We worry about too settled down.
His blood oxygen is at 97% and that's good.
His hands and feet are as warm as the rest of him. His hands are such a cherubic red I felt moved to take picture of one. My eyes watered, yes I have a soft spot for the simple things.
After being mostly awake the entire afternoon the soothing snoring resumes.
PGR

3:00pm Seth is able to start eating, "as tolerated". He started with a popsicle, then milk and water as the chaser. He moved on to baby food squash and now a few bits of banana. He's getting a lot of TV. Nana and Papa tease him, 'There will be lots of payback time in the form of reading books.' He's been given a half dose of morphine this morning and he is coughing a bit. There is still fluid on his right lung. We haven't seen the respiratory therapists in a while (due at 4 pm.) He drifts in and out of consciousness and is taking short cat-naps(10 to 20 minutes) all day. He's awake more and more each time he comes around.

8:30am An interesting night, Seth is waking up for longer times every hour. The respiratory therapist comes, is it every 4 hours (we've seen three so far) and vibrates his chest. After these visits --suctioning optional-- he's tired and sleeps soundly. As time wears on he twitches and shifts from side to side, ties to remove the nose-fed oxygen tubes.
The morning rounds brought Doctors Sutton and Overman. Dr. Sutton is asking for all the drugs to be reduced throughout the day, dopamine, milranone--drugs that are used to pace the heart, keeping the pressure low. The lasix is coming down to 12 hour intervals. Dr. Overman reduced his heart rate from 130 to 110 bpm. This will increase his blood pressure, but not noticeably so far. His blood oxygen saturation is 96% to 97% good. Also, from the 5 am blood draw, the nurse said all his blood work looked good. They took out a IV from the left foot. The drain tube from the lower part of the chest still needs to stay in until the air comes off the lungs--not yet. PGR.

9-23-09

6:10pm Doctor Overman stopped in and gave a listen to Seth's heart. He was pleased with the sounds and the look of Seth. He checked his pacemaker and was still unconcerned with needing to give Seth a permanent pacemaker.

4:30pm The respiratory therapist came in to apply the vibrator to Seth's rib cage, to loosen the fluids in his right upper lung. The vibration is --I suspect-- soothing. Afterwards however, comes the suctioning. After a bit waffling she decided to have him sit up and try to cough, which went well enough--he's still more asleep than awake, but the oxygen tubes a prime target to get out of his face whenever he gets near waking. Then the suctioning, putting a tube in his mouth to get him to cough, proved more stressful for the helpers and him. I couldn't watch the entire procedure. The results are good, his oxygen saturation level increased 2% and is now stable at 96%. Since that time he's mostly slept, waking once to ask for ice chips. PGR

3:15pm Seth's color is good. Now the water weight is gone, his eyes, feet and hands have returned to normal size, his skin color is good. He awakens and wants to itch his nose and remove the oxygen tubes. He's still sleepy. Sleepy is good. Still, the few minutes he's awake are important, he seems to be staying with us a little longer till he drifts back to sleep. He still has some congestion, fluid, on his lungs. This should clear up when he is able to be awake and cough it out. He's snoring now the breathing tubes are out. It may not be the best, but that's how he's always slept--it's familiar and in an odd way comforting. Sara mentions that the catheter tube is now out...and he's a half pound less than his pre-operative weight. So his diuretic concentration--lasix-- is being reduced from 6 to 8 hours. PGR

12:20pm Seth is waking up and crying for water (he has no voice yet). He can't have any water until 3:30pm. He's thrashing and trying to pull his tubes off. He is awake for a few minutes and then back to sleep for a few minutes. We have started a routine of 1 or 2 of us by his bedside. When he wakes he is grabbing our hands and falls asleep hanging on. Peter will be here after 1:00pm to spell us off.

11:15am Seth is now off of his breather and just supplemental oxygen through the nose. He had to breath on his own for 10 min before they would remove the tubes. He was awake, and not happy about this. Very distressing, but it is done now and this is a big step to moving out of intensive care. He recognized Steff and Erik. He's back asleep and that is what they want as they want him to wake up on his own.

9:30am Seth's two front chest tubes have been removed. The back one needs to stay for awhile longer. His carbon dioxide levels are still a bit high (caused by the medication to keep him asleep) so now that the medication has been stopped he has to sleep until the CO2 level is reduced. His nurse hasn't been given a exact time as to when they will take him off the ventilator. The pacemaker is now only pacing his atriums (the upper chambers of his heart) and he has been taken off the medicine for the heart.

6:30am Seth lost 4 1/2 pounds of liquid last night! They are reducing his sedation medicine. They expect to wake him sometime this morning.

9-22-09

7:30pm Seth is stable and his temperature is down. There is nothing more that will be done tonight other than the usual labs around midnight. Tomorrow morning a decision will be made about removing some of his tubes.

2:30pm There is a discussion about taking Seth off his breathing tube tomorrow. If so, they will start by changing the sedative he is on. That will allow him to start waking up. He needs to be conscious to have the air tube and the catheter removed. This procedure will start at 4:00am with the tubes being removed at about 10:00am.

2:00pm After Dr. Overman moved the chest tube, more fluid and air came off Seth's chest. The x-ray of his chest looked good. Seth's core temperature is high. Tami (a friend of ours whose three children have had many life-saving interactions with Children's Hospital.) suggested getting a red and white blood cell count. Dr. Sutton agreed and the labs were done. Seth's red cell count is up but the white cell count is within a normal range. So far, it doesn't look as if he has an infection.

9:30 The tube in the back of Seth's chest has been repositioned. He will have x-rays at noon.
He lost no weight over night. He is unable to process the amount of fluids going in as well as the extra 5 pounds he must lose.
They tried taking him off the pacemaker and his heart rate fell to 104 beats per minute and he needs to be at 130, so he is back on the pacemaker. They have reduced the amount of heart pacing medicine and he is tolerating that well.

7:00am Seth had an uneventful night. There has been an accumulation of air in his chest cavity. They will try to rock him to see if they can get it out or he may need another tube put in. They increased his pain medication to keep him quieter. The pain medication is also a sedative.

9-21-09

5:15pm Dr. Overman came to check on the drainage from the new tube. It seems to have done the trick. Erik and Steff were in the room and Dr. Overman asked if there were any questions and Seth raised his hand.

3:00pm The chest tube was placed in Seth's back just below the ribcage. It is draining blood as well as air. Seth has been having trouble keeping his oxygen levels above 92%. Part of that is that his lungs are struggling, but the drs. don't seem to think it will cause problems. We have to remember that for the past year, Seth's high oxygen level was 84% and much of the year he was in the mid 70's, so 'dropping' to 88% is still high for him. As the fluid is drained from the chest cavity there will be less pressure on his lungs, so the oxygen rate should go up.

They also added another iv line. This doesn't mean that they have had to 'stick' him again. He has one iv line into his left jugular vein (in his neck) and 6 lines are attached to that. This new iv is FOOD! Now he has 8 bags hanging around him.

2:00pm Dr. Overman had to put the chest tube in. He’s not sure why there is an air pocket there because that is not a part of the chest they were in. He believes that it will be a few more days before they wake Seth up.

They are doing an echo and the results are due back this afternoon.

9:30am
Seth has a small air pocket in his right lung. They are going to try to get it out by moving his body. If it doesn’t come out they will have to put a tube in the back of his chest under his rib cage.

They have increased his diuretic as he still isn’t peeing enough. As they are giving him liquids he needs to be peeing as much as he takes in and also working to eliminate the extra pounds. He still has about 5 pounds to remove. They have changed his air tub to a larger size so there is not so much blow-by.

9/20/09

This is a rough transcription of the post operative debriefing by Dr. Overman describing Seth’s surgery given to Erik, Steff, Sara and Peter, about 6:35 pm Friday September 18th 2009. Unfortunately we lost the beginning so we begin mid-briefing.

Minutes after leaving the operating room, and still in their scrubs, Dr. Overman and Dr. Thomas Yeh, Jr., [Chief, Pediatric Cardiothoracic Surgery, Tulane University New Orleans] came into the waiting room.

Overman: We pulled the pulmonary arteries to the front instead of leaving them in the back. This is a standard maneuver in another operative setting not common in the Nikaidoh. That aspect of it was interesting for us. We would have been out two to three hours ago if not for the bleeding issues. You have to be careful with that because you are pushing on the pulmonary arteries, the heart gets dusky[?] the blood pressure is low—it’s kind of a struggle. We are fortunate that his rhythm is really pretty good. We are pacing his upper chamber of his heart at a rate we feel is appropriate for his age, just having had this big operation because his own native rate is a little slow, around 90 [BPM.] We are pacing him at about 140 beats per minutes. The nerve conduction system of the heart works normally. So that’s kind of a major thing.

Sara: Does that mean he would need a pacemaker?

O: We can’t say that for sure because of this slowish rate that he has right now but I think that that would be quite unlikely. His heart function good and valve function is good. The aortic valve doesn’t leak . There is no obstruction to flow. In terms of the objectives of the operation, we [have] met those. [Assuming] he has a quiet uneventful night here ---you look at him sideways---for the first twelve hours or so. [And you ask yourself] Is this new arrangement going to be a stable one for you? Assuming that his night is quiet and he doesn’t have issues with bleeding, still—which I think is a bit of a worry. I think we have that addressed properly. The first four hours of chest tube output , could be more than would normally see. We would want that to trail off fairly promptly.

Sara: Within the next four hours if it doesn’t trail off, you have to go back in to address the bleeders.

Overman: That would probably be correct.

Steff: The Nurses will know how much is too much?

Overman: Yes, I’ll be checking for that.

Overman: They are just moving him over to the intensive care unit. They will get him settled in there. Take a chest x-ray, get the bed kind of arranged [which we found out meant; getting the basic monitors attached for heart rate, blood oxygen level, respiratory rate, blood pressure in vein, blood pressure at cuff, core body temperature, and extremity body temperature. Also, six infusion pumps for continuous drugs going to three IV’s. In addition to the 6 lead pacemaker, he also had a respirator tube connected to his left nostril, and out of the right nostril a drain tube for his lungs] When the nurse is happy she’ll come and get you. I would think that will take 30 minutes or so. [In retrospect we now understand why it took the better part an hour.]

Overman: He had a nose bleed from the breathing tube. We put that in through the nose so that is stable because kids thrash around a lot. You know they give him the anticoagulant for the heart lung machine and every once in a while that will result in a nose bleed. So they are going to get him cleaned up for that. We will be watching him, so it will not be an ongoing issue either. Very rarely, [we] have to pack the nose to get it to stop. When all the coagulation things are fixed then that [nose bleeding] stops.

Erik: How many more units of blood do you have to give him before you start getting worried---?

Overman: If you are going 10cc per kilogram and he is 15 kilos and he is going 300 per hour and that doesn’t pretty promptly trail off, then that’s a problem. I think it will be ok.

Steff: I have one last kind of creepy question? That stenotic valve, did you guys actually cut that out?

Overman: Yes. We cut it open.

Steff: Is it still in his body?

Overman: Yes, that part of it. The leaflets we removed and those go to pathology and they look at.

Steff: OK. I was just wondering if it was one of those things that the pickle in a jar and give to you.

Yeh: No, no, we won’t be sending you home with any ‘pickles’.

Lots of laughter.

8:30pm They had to bagged Seth again. Although his oxygen had dropped to 80% (which is about the level he has been at for the past year) it was too low for them. He was put back on 60% oxygen through the ventilator and they asked Erik and Steff if he had allergies. We think he may have hay fever. He came into the surgery with a runny nose, but not a cold. Erik and Sara have hay fever allergies. They are adding a decongestive medicine one of his iv drips.

7:21pm So, Seth gave his nurse a very stinky toot. This is a good sign.

We have been told that he has another 4 pounds of water weight to lose before they will start waking him up. His bed has a scale built into it.

12:45pm The nurse had rolled Seth onto his left side (they rotate his position every 2 hours from his back to a side) and his oxygen dropped to 60% and the had to bag him to get him back. When put back on his back his oxygen levels rose to 94%. They think there is fluid on his left lung and have done a series of x-rays.

The gauze is gone and you can see his sutures. We will post pictures later. The bleeding from his chest is almost gone and his peeing has increase.
The drug they are using to control his heart rate is amiodarone.
11:22am They have reduced the amount of oxygen being provided by the ventilator to 50% and Seth's oxygen levels in his blood is holding at 98%. They have decreased the ventilator’s power to 1/2 which is 22 breaths per minute.

9:30am Erik called the nurse and she said not to hurry down. Seth is still stable. They had to put him back on his pacemaker last night as his heart was beating erratically. The nurse assured Erik that this was normal and would probably happen three to four times more. Since Seth came out of the operating room, they have increased the dose of pain medication three times. We don’t know the percentage of the increases, but we do know he is a hard child to keep quiet, let alone sedated. He has been put on a different diuretic medicine to help drain the fluids from his tissues. Lasix is primarily used to help you pee and of course, that function needed to be restarted after the surgery. They have changed his heart medication.

9/19/09

8:30pm Erik, Steff, Peter and Sara went home for a good night’s sleep. The Docotors. have no pending orders to change things with Seth other than to do lab work at midnight.

6:49pm They have replaced the 6 lead ekg monitor with a 12 lead ekg monitor for more accurate readings of his heart.

They have started to give him potassium as his urine output has started to increase. He is extremely puffy and it's most noticeable in his face and hands. He actually looks like a regular little boy rather than our very thin Seth.

3:47pm Seth is getting his chest gently thumped on with a massager. This is to breakup the congestion. He had a secondary intravenous blood pressure iv added in his foot. The one in his chest stopped working.

His temperature has been high. He has been having ice packs placed on his back and stomach to control his temperature but they also have to run two heating lamps because he is cold on his extremities.

12:36pm Seth heart is beating on its own. The pacemaker is now in a standby mode and just there in case there are not enough beats per minute.

Dr. Overman was in at about 7:00am. He took Seth off the pacemaker, practice run. Seth's heart doesn't have the strength to keep his heart rate at a little over 140 beats per minute. It is about 125 per minute. So Seth was reconnected to the pacemaker and they will try later.

The surgery went as well as expected. Seth is still on oxygen and that probably won't change today. He is still retaining too much fluid. They have given him Lasix as the diuretic.

He was also seen by Dr. Gremmels and Dr. Sutton has called in.

9/18/09

10:15pm Peter and Sara are heading home. Seth's blood output has slowed and they are not going to take him back into surgery.

8:10pm Sara and I went in to see Seth in the PICU. He is breathing normally, his blood oxygen level is 96-97%, woweee! We are so occasioned to seeing 76-80%, good to see him near normal. The nurses were cordial. His BP is still near 100. He is a mass of tubes, IV’s (3 each) , oxygen is being given through a ventilator—did we say-- he has a temporary pacemaker for one chamber of his heart, keeping his heart rate at about 130. Through the mass of connections he looks healthy—of course we are concerned and happy that we’ve come this far. The nurses are busy balancing he medications. The bleeding has slowed down--that’s good too. PGR

8:00PM and the nurse came by to collect Erik and Steff to see Seth in the PICU (Pediatric intensive care unit.) Ideal blood pressure is 90 and he’s running about 100. So need to keep voices down and no stimulation in the PICU. So off they go. Sara came back with the Anesthesiologist who commented that things went very well. She stated that there were quite a few sutures, each of them a potential bleed site(paraphrasing liberally here.) His chest cavity was dry when they closed and they would NOT have closed if he were not dry. PGR

Around 6:45pm Dr. Overman and Dr. Yeh. stopped in to debrief us with the wonderful news; the surgery met all the technical objectives. We'll put in some details, later, the last several hours in the operating room were to clean up "bleeders." They are concerned, and will be watching carefully the output from the chest cavity drain tube. Reductions in blood thinners and the body's natural healing mechanism should close off the remaining "leaks." However, this will be monitored throughout the night--the next 4 hours in particular-- if necessary they will go back in to make corrections. At this time, the nurses are settling him into the PICU (pediatric intensive care unit.) When he is settled into his situation we will be able to visit him. Recall we do not expected to be allowed to awaken for at least 24 hours. This is literally going in to sooth our own need to see him. also, whatever subliminal things go on, the scent of our bodies, the sounds of our voices, the touch of our hands, to offer the assurance that loved ones, those that love him so much are present .

3:50pm Dr. Gremmels just told us that there are starting to close Seth up. He does have an external pacemaker and will for about 7 days. They will slowly take him off it by adjusting the electrical pulse and seeing if Seth's heart can function on his own.

2:53pm Dr. Gremmels came in. They are starting to warm up Seth's heart. They were able to handle the pulmonary stenosis with out using a valve. Before Seth's chest is closed Dr. Gremmels will do an echo to determine that there are no bleeders and that there is enough pressure in the vein so that he doesn't need the valve. If needed, they can restart the heart machine and add the valve.

12:33 Dr. Gremmels and a nurse practitioner came in. Seth is about half way through the procedure. The aortic artery and valve have been moved. They are starting on the reconstruction of the pulmonary vein.

11:20am Dr. Sutton came in and said that they have started the resectioning.

11:00am Dr. Gremmels came in. Seth is doing well. They are about to put him on by-pass. Then they are going to resection the pulmonary valve area. The goal is to not put a valve in at this time. If Seth does get a valve he will have to have it changed the first time when he is about 6 years old. If no valve is added he will need to have a valve added when he is in his late teens or twenties. This is the valve that has the stenosis.

Then they will move the aortic side, this is the artery and valve. They will shore up the VSD and ASD. Then they will close the hole which was create soon after he was born. There is a possible problem with one of the veins which exits too close to the hole. They may have to move that vein.

Surgery started at 9:54. They had to put in at least 3 ivs and another echo before they could start.

We were at the hospital at 6:15am. Around 7:30am we met with Dr. Overman and got to meet Dr. Yeh. Seth was given a liquid medicine to make him woozy. It was funny to watch him slowly fall asleep. His face got big smiles and goofy looks as he slowly slipped into dream world. He was not quite out went the nurse anesthetist took him to the operating table. They log him in at 8:04am. At 9:22am Dr. Sutton came in to say hello and that the operating room was giving Seth another echo.

9/17/09

Seth had his pre-op starting at 8:30am today and is on schedule for his surgery for tomorrow. His height was 39.75" (which makes us believe that the July height is wrong) and his weight is 31.8 pounds.

He had his blood pressure taken and his oxygen was at 74%. A chest x-ray was done and then he saw Dr. Sutton, who believes that the surgery will not need the full 10 hours.

Then on to the hospital for more pre-op work (lots of paperwork). There was a new technician on for drawing blood and after 5 pokes the 'seasoned' technician stepped in a found the vein. It is hard to watch and listen to Seth scream. He is not a good 'test' patient. It took until 1:00pm to get everything done.

We learned from the Dr. who will be doing the anesthetics that they will be priming the heart/lung machine with blood instead of salt water. They use blood for priming the machine for children, salt water for adults. Children do not have enough blood in their system to fill the machine. Adults can manage that. During the operation, Seth will take on extra weight in the form of blood/liquids. After the operation, when his body weight is equal to what it was at check-in they will take him off the ventilator. This is to make sure there is not extra pressure on the lungs. They expect that to happen in 24 to 48 hours.

Part of the long day was getting the paperwork for organ donor. The hospital was reluctant to have those papers filled out in advance. Steff and Erik wanted it done so they wouldn't have to deal with 14 pages of questions if Seth didn't make it though the surgery. We learned that Seth could only donate his eyes and cartilage if the reason for his death was heart failure. It has something to do with the lack of oxygen to the organs and how rapidly they deteriorate once they are no longer receiving blood. With this operation there is always a change that he could have a blood clot to the brain and then he would become a donor for more organs. This was a exhausting part of the day.

He needs to be in the hospital by 6:15am tomorrow and the surgery will start at 8:00am. He is the first on the list.

8/14/09

Seth had his cath procedure today and did fine. We, (Erik, Steff and Sara) were at the hospital at 6:15am and by 8:00 they took him into the cath operating room.
We were able to be with him as they put him under. It was much easier on the adults this time as they gave Seth some gas to put him to sleep and then inserted the IV. He came out in good spirits and spunky. It was hard to keep him quiet for the four hours he needed to rest before taking him home. Mom, Dad and Sara needed sleep though. Of course, Seth fell asleep on the ride home.

8/12/09

Yesterday Seth saw Dr. Sundberg, an orthopaedic surgeon. Seth is knock-kneed. His x-rays show the differences between his legs. If he were standing straight he would be at least another inch taller. His right leg is more severe than the left. For now, they are going to watch his growth. This problem may correct itself by the time his is 15 years old. If it doesn't, he will need to have steel plates put in the legs just above and below his knees. This will help the body deposit bone tissue on the inside of the legs, lengthening the bones at those sites until the outer length and inner length are equal.
7/27/09

Seth just had his 3 year old check up. He is now 36 3/4" tall and 31 pounds. The lack of weight gain since last February has his pediatrician concerned that his heart is now taking its toll on him. Otherwise, he is extremely health.

Seth is a normal active boy. He attends school 3 days a week, swimming lessons twice a week and until recently had music lessons once a week. He loves to climb and seem to have no fear---until you ask him to go down a slide. He won't do that.

Seth's next cath procedure is scheduled for early morning August 14th. Dr. Gremmels will be doing the procedure. He is the one who did it before.

His first major heart surgery will take place on September 18th at Children's Hospital - Minneapolis. The details of the surgery have not changed since we met with Dr. Overman two years ago, except for the recovery time. If all goes well, Seth will be out of the hospital in two weeks and and another month to recover at home.

The following is a up-to-date description of what is wrong with Seth's heart from a letter which Dr. Sutton wrote to Seth's pediatrician Dr. Busch.

"He has been followed with a diagnosis of complex congenital heart disease consisting of D-transposition of the great vessels, large VSD, significant pulmonary valve stenosis, and small pulmonary annulus."

"He is, however, scheduled to undergo complete correction using the Nikaidoh procedure..."

The following are two of the websites which describe the Nikaidoh procedure. There are many more now than there were 3 years ago.

http://www.circulation.or.kr/workshop/2008spring/file/418_1030_2_lc.pdf
Start on page 50. This website is graphic and discusses other procedures that are used for this type of heart problems.

http://mmcts.ctsnetjournals.org/cgi/content/full/2008/0220/mmcts.2006.002337
This site shows the procedure step-by-step. This site has video as well as pictures of the stages of the operation.

2/15/09

Seth is now 30 pounds and 36 1/4 inches tall. He just had another ultrasound and the heart is stable. He is at 80 percent oxygen, which he has been for about a year now.

He is a happy, active 2 1/2 year old, with NO being his favorite word or the phrase, "Give it to Oliver." when it is something he does not want. He is in daycare/preschool 3 days a week for about 6 hours a day and loves it. On Mondays he has swimming lessons, now with Daddy, and on Fridays, he has music lessons with Mommy or Sara.

We are to meet with his surgeon in the next few months to try to determine when the surgery should be scheduled for. There is talk that it will be done this summer. Sara and Peter are hoping that, if Seth is stable, the surgery could be put off until the last week of September. It would be nice to give Seth the summer to play outside.