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!

Tyson is doing GREAT!

Tyson has been doing GREAT the last little while. He is starting to sleep better at nights. He still wakes occasionally but usually just needs to be tucked back in and he's fine again. He hasn't been waking up sweating or screaming so I think the nightmares have gone away finally. He still isn't too trusting of when we go away somewhere, as he often says, "No poke arm" when we get his coat on him. His last INR level was this past Tuesday and we won't need to go again until next week Tuesday. As long as his level stays consistent, I think the need for bloodwork would go down to bi-weekly. He actually does very well during the bloodwork, but hates the anticipation of it. He often screams before they even get his sleeve rolled up, but once they have poked him, he enjoys watching the blood collect in the vile. LOL And he does enjoy getting spoiled with stickers afterwards too.
Tyson continues to be an active two-year old with an expanding vocabulary and better energy levels than pre-Fontan. He is often running around the basement without needing to stop for a break to catch his breath like before. His colour remains good, and his extremities are much warmer than before too, even despite the cold weather! Brian has built an ice rink in our yard this year, and Tyson has discovered that he LOVES skating. He doesn't get to go out as often as his siblings do because Brian or I need to be out there with him, but we try to give him time on Saturdays and at least once during the week to enjoy the ice. During the days we don't have time to go out, he is constantly asking me, "Skates on? Skates on?" He does amazingly well out there too! He wears the "bob skates" that attach to the bottom of his boots, and he glides slowly across the ice, chasing after the puck with a hockey stick in his hands. I always slide around on my knees only inches behind him but if I get too close, he swats my arms away. Of course he wears a helmet (because he's two...and because he's on warfarin) but he did fall on his face today. His feet flipped out from under him and I was right there, but he fell so quickly that I didn't quite catch him in time, and his face smucked against his hockey stick. The helmet protects his head, but not his face! His teeth cut through both his upper and lower lips. So I went running to the house with him in my arms, got a cloth, and washed his mouth up. The bleeding was barely even done and he was asking to go back outside! *sigh* Boys....
I am pretty sure that Tyson is even more obsessed about hockey than our other boys were. He loves to go downstairs to play hockey. He loves to wear the Fisher Price roller skates, but we only let him skate with a skate on one foot. If he asks to wear both roller skates, then he needs to wear a helmet. He is always taking off with one of our winter gloves and using them while he plays hockey. For some reason, it's only one glove that he uses, so we are always searching around the house for our matching glove before we go outside. When he's not playing hockey himself he is looking at his hockey cards in his binder, and if we have to go out somewhere while he's looking at his cards, he insists on taking one or two cards with him in the van. He also really enjoys playing with the NHL figurine we bought him. Everything in the house is either a stick or a puck, and he can make a game of hockey out of anything. The funniest thing is the way he says hockey. He has called it "ee-awe" for as long as he's been talking, and even though he can pronounce "hockey," no matter how many times we correct and reinforce the word, it is still ee-awe to Tyson. He also has a particular "hockey walk." Whenever he has his glove on to play hockey, or has his stick in his hand, he sways back and forth when he walks, and takes long strides as if he's skating and stick-handling. It is so so so cute and Brian and I just love how much of Merrick's goofy personality we see in him when he does this. It helps that he has the same build as Merrick too; a big head, long back, scrawny legs and no bum :)
The nurse practitioner at Sick Kids got a real kick out of him when we were there over the holidays for an appointment. Naturally, we packed along Tyson's mini stick, and he was playing hockey in one of the treatment rooms while we waited for her to come see him. He would pass the puck back and forth and say, "He shoots, he scores!" and then make the sound of a buzzer. The nurse practitioner gave Tyson a hockey Mr. Potato Head, complete with skates, a helmet, a stick and puck, and even a Canadian jersey. Tyson just LOVED it! It really shows how well the staff at Sick Kids know Tyson when they give him a gift like that! Another time he got to chose a toy from a treasure box after he got his chest tube pulled, and he picked a hockey card. His love for hockey was just born in him I guess. Part of the Kottelenberg in him, maybe?
February is Heart Month and February 14th is Congenital Heart Defect Awareness Day. For more information on CHDs, please read the article I wrote for the Orangeville Citizen by clicking on the following link:
February 12th is coming up! We are so excited about the annual Wyatt's Warriors Have a Heart Gala at the Grand Baccus in Toronto. Several friends of ours have also purchased tickets, so we were able to reserve an entire table for the event. All proceeds go to the Labatt Family Heart Centre (Cardiac Critical Care Centre) at Sick Kids and the Jennifer Ashleigh Children's Charity, in support of families affected by CHDs.
So Tyson's next echocardiogram and cardiologist appointment got changed to February 23. If you don't hear from us again until then, it's because we're busy enjoying life (or playing hockey!)
Thanks for checking in on us :)
Mel:)

Nightmares...

*Yawn* I am really praying that Tyson's memories will soon fade into the distance. Since he got home from the hospital he's been having bad dreams that cause him to wake up in a sweat, yelling "No! Go 'way!" One time I even heard him say, "No poke arm!" He doesn't have the nightmares every night and last week they were starting to get better again. But since Tyson went in for the chest tube removal, the last two nights have been bad again. Yesterday he also had bloodwork, which isn't exceptionally painful, but I don't blame him for not trusting anybody anymore.
At nights there have been times that I go to Tyson's room and find him still sleeping, shaking his head back and forth, eyes squeezed shut, thrashing in his bed. When I bend over to stroke his head trying to "shhh" him, he starts hitting me in the face, just like the good ole' days in the hospital.
Last night was an exceptionally bad night. He was up about every hour. On nights like that, Brian and I usually take turns trying to calm him down, but each of us still wakes up every time Tyson does. Then just as we are finally dozing off, we'd hear Tyson crying again. He is suffering from a bit of a cold right now, so that might be aggravating the problem. Thankfully, by early morning Tyson finally settles well, so by the time he wakes in the morning, he has usually had a few straight hours of deep sleep. And he still naps during the day, so at least he can catch up on sleep at that time. Brian and I, on the other hand, we just walk around like zombies until this stage goes away :)
I know that there are probably some moms out there who deal with night-waking all the time, so I really shouldn't complain too loudly. But our kids are usually very good sleepers, so it's hard to get used to this. (My oldest 3 slept through the night by 3-8 weeks old. With Tyson, the doctors told us not to expect a heart baby to sleep through the night until he was a year old...Tyson was sleeping through the night at four months old :) But I'm not worried about myself as much as I wish that Tyson can move on and put these memories behind him. I feel sad for him that he walks around not trusting anyone, always scared that someone is going to give him medicine to make him sleepy, or wanting to draw blood from him.
If you are still praying for Tyson and are wondering which matters to bring before the Lord on his behalf, please pray that Tyson can soon put this traumatic experience in the past, and that he can sleep peacefully again at nights.
Mel:)

"Bye-bye Tubie!"

I will give thanks to you, LORD, with all my heart;
I will tell of all your wonderful deeds.
I will be glad and rejoice in you;
I will sing the praises of your name, O Most High
Psalm 9: 1,2


Today we said good-bye to Tyson's last JP tube! His chest x-ray was clear again, and he has had minimal drainage since being off the steroids, so it was good to go! (We were a little worried about the x-ray since Tyson has quite the cough right now...but it must all be upper respiratory because his lungs are clear. I packed overnight bags just in case. Looks like Murphy won again :)

As soon as we walked into the treatment room, Tyson was saying, "No owies! No owies!" But once we left again, he was waving, "Bye-bye tubie!" (He did have a bolus of morphine for the procedure but it never dulls ALL the pain.)

It feels sooooo good to have this stage behind us now. Officially. It's never over until the fat lady sings. Well, I was singing the whole way home :)

Tyson is now in a pair of jeans for the first time in 4 weeks, and a nice onesie undershirt again finally...and he's going to have a nice warm bath tonight :)

Tyson will remain on the minimal fat diet for 6 weeks starting today. The purpose of this is to prevent the reaccumulation of fluid, since fatty foods can irritate the lymphatic tissue, potentially causing it to start leaking again. It hasn't been too bad though; it just takes some extra thought when grocery shopping, and sometimes I have to cook two completely separate meals. Overall it's going well.

Thanks for praying along with us, everybody. We surely do appreciate your thoughts and prayers. We are so pleased that the steroids worked and he was finally able to stop draining...four weeks later!

We're at the pediatrician next week for a checkup and to get the stitches from the tube insertion removed. Then the next trip to Sick Kids is January 26th. Tyson will have a full echo, ecg and appointment with his cardiologist then. Look for an update again around that time.

Blessings to you all,
Mel:)