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!

Adjusting to home life again...

Tyson is doing GREAT! I love beginning a new entry with this statement, because he really, really is! He hasn't been this happy or energetic since about a week after he was home from his Fontan surgery in December. As much as it was not fun to be in the hospital with him, it sure did him a world of good!

He is back to sleeping through the night again! For a couple of months after his surgery he was having terrible nightmares that woke him up several times every night. Then once the nightmares stopped and he settled again, he had to have a sedated echo at Sick Kids that started the cycle all over again. After a few more nights of bad dreams he then started getting sick with a cough. After a few months of up and down nights, the renewed sleep is doing us all a world of good!


Tyson pretty much bounced right back again after he returned home from his bout with the flu. He has returned to the energetic, goofy boy we know and love. He is happy to play whatever Kenya wants to play during the day, and at times Kenya will even pick up a hockey stick to play with him too. He also enjoys pulling up a chair or stool to the counter and helping me bake or cook. Most of his day is spent chasing after a hockey puck or ball, or transforming whatever he has in his hands at the time into a stick or puck. But he has his quieter moments too, where we find him sitting beside the book shelf in his room, reading the same books over and over. There are three books that he can recite word for word along with us. "The Very Cranky Bear," "Big Smelly Bear," and "Up, Up, Down." Occasionally I try to trick him by filling in silly words in place of the books' written script, but I never fool him. His laughter is pretty contagious though! He continues to crack us up with his sense of humour and funny sayings. And of course, his two-year old attitude does come shining through from time to time as well!


From a development perspective, he is only slightly behind other kids his age in speech, gross motor skills and fine motor skills; but those things are being watched carefully by his infant-child-development worker every month and he sees a speech-language pathologist every 4 months. The last time we saw the speech pathologist, her conclusion was that he was not in need of speech therapy yet because his vocabulary/word usage is well within the range of where he should be. I think down the road he may benefit from some therapy because he is not very clear when he speaks and he still drops a lot of consonant sounds at the beginning and end of words. All my kids did this so I am not overly concerned, but I think because he is already in their system, he may benefit from a bit of help.


Tyson saw his family doctor on Friday and things look really good. His lungs sound great and there is no wheezing anymore (although he is still on the puffers.) He still has a red streak on one of his cheeks from the tape used to hold the O2 nasal cannulas in place. I put Visible Aid on it every day to avoid scarring, he sure has enough of those already!


He is still going for bi-weekly bloodwork to check his INR levels because he's on the coumadin. When he was at Sick Kids his level was through the roof because his appetite had changed so drastically. Now he is back on the regular 2 mg dose and the INR level seems to be staying stable there for now. When he goes for his next routine bloodwork, he will also be getting checked to see if he is varicella immune. He did have the chicken pox last fall but our family doctor wants to double-check that he's not in danger of getting them again later on in life. If he's not immune, he'd need to have the immunization to prevent him from being infected again.


Brian and I had the opportunity to take our older three kids to a Toronto Rock game at the ACC on Friday night. This was compliments of the Starlight Foundations' Great Escapes program. It was great to have a night of (free) fun with our other kids, since we spent their entire March Break (and the week after) in the hospital with Tyson. And Tyson was lovingly cared for by my his grandparents, who enjoyed Tyson's goofy character all night long. He is such a clown, I love it!


Tyson's next cardiologist appointment at Sick Kids is on May 11. From there we will be looking at a date for his next MRI and heart catheterization procedure. I am not looking forward to the MRI/cath. We of course are praying that the tests reveal no further stenosis in the pulmonary veins, but we're trying not to set ourselves up for disappointment either. The ugly truth about pvs is that it often comes back and it continues to be a persistent problem for the rest of the patient's life, however long that may be. We've met many people in the CHD support groups online whose children also struggle/struggled with pvs, but we don't know anyone who is older than five years old. We wish Tyson's cardiologist could just give us an answer like, "Oh, no worries! The pvs will stay away forever and you can enjoy a long, happy life with Tyson for many many years!" But instead he just shrugs his shoulders and says he doesn't really know. We understand that he can't make promises that he can't keep but we just wish somebody out there could tell us that Tyson is going to make it. That he's going to kick this pvs in the butt and it will never, ever come back again.


We don't like not knowing what the future holds for Tyson, but we do take comfort in knowing that he is in God's hands. We try to focus on today; how well he's doing now, being thankful that he has already overcome three major open-heart surgeries, that he's come home again three times after being hospitalized because of an illness that wiped him off his feet, and that today he is a lovable, happy, goofy kid with the best giggle in the world! He is such a BLESSING! I would never wish CHD on anyone, because it is so ugly and so difficult. And yet, the goodness and grace that God has shown us through Tyson is what we try to focus on. When he is sick, we get so scared that God is going to take him from us and we pray and beg God to just let us enjoy one more happy day. When the days are good and he's healthy, and he's running around being a goof ball, I just squish him and kiss him all over repeating in my head "You are such a BLESSING!"


Isn't our God GOOD?


"Because of the LORD’s great love

we are not consumed,

for his compassions never fail.

They are new every morning;

great is your faithfulness.

I say to myself, “The LORD is my portion;

therefore I will wait for him.

The LORD is good to those whose hope is in him,

to the one who seeks him."


Lamentations 3: 22-25