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!

Summer is on Its Way...

With spring weather officially here, we're hoping that summer is right on its heels so that Tyson can get into his "healthy season." It's too bad that summer is so short, it's really the only time of year that Tyson is sniffle-free, cough-free, and he doesn't rely on his inhalers as much.


Back when Tyson had his hospital stay in March, his nurse practitioner referred him to a respirologist at Sick Kids, to figure out why he always has a cough all winter long. His appointment with the respirologist is Wednesday, July 6. They are going to do PFT (pulmonary function test) called a spirometry test. This test measures how well the lungs take in and release air and how well they move oxygen from the environment into his body's circulation. Hopefully that will give us a few answers and help us better prepare for next winter.


Tyson has also been seen regularly by a speech pathologist to assess his speech and language development as time goes on. Up until this point, he was being seen every 3-4 months just to keep an eye on him. However, at his last appointment a few weeks ago, the speech & language pathologist recommended him for regular, weekly speech therapy sessions. She wanted to start him already this summer, but I showed some hesitation having to truck three kids off to a babysitter once a week so that I could take Tyson to speech. So we've decided to wait until fall when all three of our older children will be in school and I can just take Tyson out by himself. The pathologist says that Tyson's cognitive understanding and vocabulary development are right on par for his age; it's the articulation of his words that needs work. She suspected it could be from some hearing loss, so she referred Tyson to an audiologist.


Tyson had his appointment with the audiologist last week and his right ear did not pass the test. So they are re-testing him again in case it was caused by left-over congestion from his pneumonia 2 weeks prior to that appointment. So we will go back again at the end of June to get his hearing checked again. If he indeed has hearing loss, that will definitely contribute to speech delay!

These days it seems we're off to at least one appointment every week for Tyson. If it's not the speech therapist, it's an audiologist appointment, or the pediatrician, or the family doctor, the cardiologist, the infant-child-development worker...and now we're adding a respirologist to the list too!
Tyson's oxygen saturations have been less than glorious these past few weeks. At his May 11 cardiologist appointment, his saturations were low 80s and Dr McCrindle wasn't entirely happy with those numbers, even though I tried to pass it off as being from Tyson's cold. Either way, he wanted Tyson into the cath lab to undergo a procedure to assess whether or not they can close the fenestration at this time, and also an MRI of his heart and lungs to assess the status of the pulmonary veins which are severely stenosed.


We bought a pediatric finger pulse oximeter probe that we clip onto Tyson's finger to monitor his oxegyn saturations at home. When we first got it, we were checking all the time of course...and checking my sats, and Brian's and the kids'... Now we only pull it out when we are concerned about his colour. Which is quite frequently lately. Today his sats were 76 for some reason, with no symptoms of a cold. His baseline with this pulse ox seems to be 80 or 81. But we often see numbers in the high 70s too. I've been in regular contact with Stephanie at Sick Kids, cardiac nurse, because I don't like those numbers at all. Those are pre-Fontan numbers, not post-Fontan. I've also been hounding them a little bit because they said Tyson should be in the cath lab for his heart catheterization procedure within the next 6 weeks (they told us this 3 weeks ago.)


I have a feeling Stephanie called the cath co-ordinator and asked her to book Tyson in quickly, because we got a call yesterday saying his heart cath procedure will be on Thursday, June 23. That's 3 weeks away. Pre-op for the heart procedure is Tuesday, June 21.


We'd appreciate prayers for Tyson to stay healthy in preparation for this heart cath procedure; they won't follow through if he gets sick. Please also pray that the doctors will find good heart & lung pressures, that they can close the fenestration so his sats will get back into the 90s where they should be, and that when they look at his pulmonary veins through MRI, that there is no further re-stenosis and the surgery they did in December is sufficient for him for now. We're praying he will not need further open-heart surgeries on these veins.

We'd also appreciate your help with a contest being run by the Heart & Stroke Foundation. As you know, Brian and I led a team called "Heart Warriors" who rode the big bike this week, raising $9,345.00 for Heart & Stroke. It was a lot of fun! Altogether, Orangeville 10 teams raised over $33,000! In this contest, Heart & Stroke is giving out an AED to the winning team in each province, to be placed anywhere in their community. Right now we are in SECOND place in Ontario, SO close to winning! If you could go to this website (you sign in with an email address and password) and vote for ALL 23 of Heart Warriors' stories. You can vote for ALL 23 stories EVERY 24 hours. Click on "♥ this story" to vote. Please help us win the AED for our community!
http://www.bigbikecontest.ca/teams/4170883-Heart-Warriors


Mel:)

1 comment:

Joanneke said...

I'm so glad I checked your blog. We continue to pray that Tyson stays healthy and that the doctors are able to provide him with the help that he needs. It looks like you're in FIRST place now for your team!!! Congratulations!