TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

August 25, 2010


"The LORD is my light and my salvation - whom shall I fear?" Psalm 27:1

I've heard some rumours that some of you don't enjoy how long my blog updates are. Well, Tyson's blog is my opportunity to report details that I would otherwise forget. With everything that has happened since Tyson was born, my brain has turned to mush and my memory has been quite unreliable. There have been SO many times I've looked back on this blog to find details about Tyson's previous surgeries and appointments that I would have otherwise confused or forgotten.
So, if you are one of those who thinks my blog updates are too long, here is the short version for your convenience: Tyson's cardiologists and surgeons are confident that the pulmonary veins and the Fontan procedure can be completed in one open-heart surgery. We should be hearing from the surgical co-ordinator in the next 2 weeks with a surgery date. Most likely October or November.
Thanks for checking in!
Good-bye.


Wednesday, August 25, 2010
Mom and I took Tyson down to Sick Kids again today for his echocardiogram, ECG, and appointment with his cardiologist, Dr. McCrindle. The last time he had an echo Tyson did not want to fall asleep and it was a pretty miserable experience. This morning, within 5 minutes of receiving the chloral hydrate, his head became heavy and he was getting grumpy. When the radiologist who performed the echo started setting up her echo equipment immediately after he received the sleep drug, I snickered to myself and thought, "Come back in an hour, lady." But Tyson actually didn't fight it for too long and he was sleeping in less than 20 minutes.
Once he woke up, however, he turned into a wild boar. Since the chloral hydrate puts one in a deep sleep, you wake up feeling groggy, almost drunk. Well drunk he was! And not a happy drunk either, but an angry drunk! He hollered and screamed off and on for over 3 hours. After the echo, and once he was eating and drinking again, we still had to see Dr. McCrindle so we waited around for him. The cardiologist fellow who came in to examine Tyson couldn't even get close because he was so angry. I am sure he has a sore throat tonight because, if you know Tyson at all, he doesn't really cry, he screams. Dr. Mc Crindle called him a "wild boar." That is exactly what he sounded like. Poor guy was so disoriented, he wasn't able to go down and walk around because he could barely hold his head up straight. He was tired and hungry and whoozy all at the same time. I don't remember it being that bad last time in February, but the nurse was thinking that maybe last time he may have spit some of the chloral hydrate out, which could be why he took so long to fall asleep. Maybe this time he got the full dose and his head wouldn't quit spinning. A few times during lunch he did point to his head and say "ow" so he was probably spinning like mad. Poor guy.
We figured that as soon as he got in the van he would be out like a light, but no such luck. Screaming all the way from the hospital to the 410. We finally exited and gave him more to eat, thinking he would go to sleep with a full belly. No such luck. Grumpy and miserable :(
He did eventually fall asleep but only for an hour.
So, what did Dr. McCrindle say? Here follows the questions I asked and the answers we've received so far:
Are we planning to proceed with the Fontan procedure in the Fall?
After discussing the finding of his heart catheterization done on August 5, the team of cardiologists presented Tyson's case to the surgeons who decide if he is a ready candidate for the Fontan procedure. The surgeons said "yes" and the surgical co-ordinator is expected to call us sometime in the next 2 weeks. I really pressed Dr. McCrindle to have the surgery as early in the Fall as possible, since through the winter Tyson catches every bug that goes around and his surgery would keep getting cancelled. Dr. McCrindle hinted that he has a feeling it will be before the cold and flu season, but he said he can't promise September. Fine with us, we prefer mid October...if we had a choice!
Are the cardiologists and surgeons confident that the small pulmonary veins can be fixed during the same open-heart procedure as the Fontan, or is there a chance they may open him up to perform the Fontan and decide they cannot go ahead?
Well, we can never be 100% certain of the outcome until the surgeons see things with their own eyes. But the MRI that Tyson had done gave a very good picture of these veins and the heart cath gave further perspective on it, so, yes, although the small veins are definitely a bump in the road, they are a minor bump and it can be dealt with at the same time as the Fontan. It will make the Fontan surgery more complicated for Dr. VanArsdale to perform, and recovery time could be longer than the typical Fontan recovery, but he is confident we can do it all at the same time.
Has Dr. VanArsdale seen small pulmonary veins before and is he sure it can be fixed?
Yes, Dr. VanArsdale is a superb surgeon and all the complex cases go to him. He is one of the best surgeons here.
What are they going to do to fix the veins? Balloon angioplasty?
No, we have found in the past that ballooning is not an effective way to go and it requires more stitching and patching that eventually breaks down. The procedure we plan to do is called the Cole's procedure, developed here in this hospital about 10 years ago. This is the route we are going to go. It requires less stitching and therefore less scar tissue, so it's better for the heart long-term.
Can you tell me in plain English what is done during the Cole's procedure?
No. It's pretty complicated and I don't perform it myself so I wouldn't be the one to ask. This is something you can ask Dr. VanArsdale yourself during pre-op.
If I googled the Cole's procedure, would I find more information on it?
Probably not. It was a procedure developed here in this hospital.
(I googled Dr. Coles sutureless Pulmonary Vein Stenosis repair - I found some information. I don't really like what I read, but we put our trust in God, not statistics :)
Will this Cole's procedure fix the pulmonary vein problem permanently or could this problem reoccur?
We can't give predictions of how his heart will grow. If these veins continue to grow along with the rest of his heart as his body grows, everything should be fine. But we won't know that until farther down the road. We'll cross that bridge if/when we get there.
What is the average recovery time for a child receiving the Fontan?
Typically, they are in Intensive Care for 2-4 days and the 4th floor for anywhere between 3-10 days. Typically. So about 10 days to 2 weeks. Typically. But I can't guarantee anything.
Will they need to make a fenestration during the Fontan procedure? (a fenestration is a surgical hole in the heart to relieve pressures in the heart, is often closed by heart catheterization 6-12 months post-Fontan)
It all depends on the pressures in his heart. During Tyson's post-Glen heart cath in May 2009, his pressures were quite high. Since then, the pressures are good again. So if Dr. VanArsdael feels that the fenestration is needed to relieve some of the pressures, he will create a fenestration. Which will be closed in the cath lab sometime later.
Will Tyson need any new medications after his Fontan?
Most often we will put them on a blood thinner until the heart gets used to its new blood flow. An aspirin a day, or sometimes Coumadin. Some adults who've had the Fontan are still on Coumadin and will be for the rest of their lives. But no more Enoxaparin injections, don't worry.
Ok, I think that is all I can think of right now. I may remember more details later on. Unfortunately, because Tyson was being such a "wild boar," my Mom couldn't help me absorb all the information today, because she was walking around with him in the hallways ( we couldn't hear Dr. McCrindle over top of Tyson's screaming!) So I am only going by my squishy memory, not my Mom's.
Take care and keep checking in on us for a tentative surgery date!
Remembering the words of Romans 8:28, "And we know that in all things, God works for the good of those who love Him, who have been called according to His purpose."
Praise God for His everlasting words of hope and comfort!
I feel so blessed to call Him "My Father."
Mel:)









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3 comments:

Steph said...

Keep up the long detailed blogs!!Always remember the blog is ultimately for yourself and Tyson, you will never ever regret the extra details you put down. Like you our blog was a search engine for past medical information, like you some said it was too long. But for each of those who say it's too long and detailed there are probably just as many, likely more, who can absorb all the information, or are in your situation and need that information. Keep up the good work!

I hope Tyson feels better today, poor little guy. Thanks for the update we will be praying for Tyson and your family.

Linda T said...

Melissa, I've been trying to think of how to apply Sunday morning's sermon to your week, and finally figured out how to put it into words. Thanks for keeping that sermon in my head all week!

Prof. Visscher brought God's word to us from Revelations 21:5: "I make all things new". He said that once things are made new, many things will be a thing of the past, including illness and hospitals. All things will be made new, and God Himself will 'have the tissue' and wipe our tears away - including those tears of frustration and worry. And we know that this is true; trustworthy and true! God Himself told John to write these words down for us as well.

Praying that God will continue to carry and reassure you of His presence.

Jay & Linda & boys

Joanneke said...

Thanks for the detailed update!! I love to read about everything the doctors are able to do to help Tyson. I find it amazing how many times they had to answer your questions rather vaguely since they can never be sure of the outcome. What a comfort to know that God knows the answers to ALL the questions and He knows the outcome too! We hope you can find peace and leave the surgery and Tyson in God's hands.
I'll check every day to see when you find out!
Lots of love,
Joanneke