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!

MRI and ECHO Day

Monday was MRI and ECHO day at Sick Kids.  Brian was able to come with us this time, and we left bright and early at 6am to be there for 8:30am (we need time for a Timmy's stop too!)

This was Tyson's very first non-GA MRI.  This means he didn't need general anesthetic but was allowed to be awake for the procedure.  Normally they do GA because the MRIs are approximately an hour long and you have to remain perfectly still.  It's amazing how nervous I *didn't* get for this MRI.  For all of Tyson's previous MRIs, I'm a nervous wreck for the whole week prior because I hate that Tyson has to be intubated and under general anesthetic.  With his history of pneumonia, having a breathing tube shoved down his airways is very risky.  Not to mention the general risk of a cardiac kid being under general anesthetic.  Yeah, I am so glad he didn't have to go down that road this time.

Tyson was such a trooper.  We had told him in March that he had to have an MRI in April but we didn't give him a date, nor did we remind him the night before.  He had been to Brian's hockey game on Friday night and was up till past 11pm.  With that late of a night, he needed to catch up on sleep and we knew that if we told him on Sunday night that he was having an MRI in the morning, he would not sleep well and would be up most of the night worrying.  So we didn't tell him until we woke him up to leave that morning.  Our other kids knew about the MRI on Sunday night because they had to get themselves on the school bus by themselves so we reviewed things with them the night before.  (I love that they're getting older!  Whenever we've have these early appointments in the past, they have had to spend the night at a friend's house the night before because we have to leave so early in the morning.  But now they are able to get themselves on the bus, I love it!) 

Once Tyson got into his hospital gown, he had to have an IV which he didn't love of course but the nurses are always so patient with him.  I feel bad for the other sleeping babies on the other side of the PACU who were having their sedate echos.  I totally remember being on that side of the room, and it was never fun hearing another child on the other side of the room screaming in fright when you're trying so hard to get your child to fall asleep or stay asleep.  Once the IV was over,  I walked with him to the MRI room.  He laid down on the table, he was secured with some heavy protective contraptions over his chest, strapped in tight, headphones on, movie goggles on, and into the MRI machine he went.   At one time as he was getting all geared up, he did manage to squeak out a soft "Mommy, I'm scared," but he remained calm once he knew I was not going to leave his side for a second.  I was able to sit in the MRI room with him, touching his feet to let him know I was still there.  I am so thankful for the wonderful technology at Sick Kids Hospital that allowed Tyson to watch his favorite Ninja Turtle movie through the movie goggles while he had his MRI.  And he was able to watch almost the entire movie, that's how long his MRI was!!!  For me, it was so long and boring.  I almost feel asleep a few times because it's so loud in there (I had headphones on and it's still loud) but every time I was almost in dreamland, the MRI bed would move position to take different measurements. 

Once the MRI was done (an hour and ten minutes later!!!!) we found Brian and Addisyn hanging out downstairs.  Addisyn loves going to Sick Kids because she gets to play in the Play Park and the volunteers there also take her to Story Time at the library.  Although it's an early start to her day, we like having her with us and then she also gets to share in Tyson's Sick Kids journey alongside him. 

After lunch, Tyson went to 4B for his ECHO.  This is also another hour-long-lay-still-and-quiet procedure.  But he's been doing non-sedate ECHOs since he was 3 so this is old hat for him.

We won't have results from the MRI  for a little while yet.  Tyson's next cardiology appointment is May 20 so we should know by then.  Actually, I've asked to have a copy of the MRI and ECHO reports emailed to me so that I can review them before the cardio appointment.  I like to see the results with my own eyes before going to Dr McCrindle so that Brian and I know what questions to ask.

We'll keep you posted.

We met Tyson's HRHS/TA buddy Chelsie at Sick Kids that day.  It's neat to run into other people that have started off as virtual friends and that turn into real-life friends.  Chelsie's Mom is one of the ladies who started the "Hearts of 4D - Sick Kids" Facebook group.   

Chelsie (4)  Tyson (6) 



1 comment:

willowsprite said...

Hello from Alberta! It's been a while since I've visited your blog so I am catching up. So great to see you have so much support from fellow heart moms. It must be a comfort knowing you are not alone in your journey! Praying results are encouraging. <3
Sherri