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!

Cardio Appt - August 10

Tyson had another cardiologist appointment this week, as well as an ECG, chest x-ray and blood work.

There are really no changes in his condition, except that his O2 saturations have been sitting a little higher these days. We praise God for that and are thankful that most of the time we see numbers in the mid-to-high 80s! At his cardio appt his O2 sats were 88 :) The nebulizer mask for his asthma is doing a good job!

Tyson didn't need an echo today because he just had one in May and he is having another heart cath procedure on Sept. 12.

Tsyon still goes for blood work bi-weekly at the lab in Shelburne. His INR level has been therapeutic (between 2.0-3.0) for the past number of weeks on 3 mg of coumadin per day. I like the 3mg/day dose much better than the 2 mg-2 mg-3 mg rotation we've been doing all summer. It's so hard to remember what he had the night before and we would always have to write it down, such a pain. Now it's a consistent 3 mg every day.

I talked to Dr McCrindle again about the Gleevac study being done at Boston Childrens' Hospital. (The chemotherapy drug being used to treat pulmonary vein stenosis.) He hadn't heard back yet from the cardiologist in charge. So I emailed the nurse in Boston again and also forwarded her email address on to Dr McCrindle. If we are going to participate in this study, we need to get acting on it quickly. PVS is a notoriously progressive disease and we are wasting precious time. Before we know it, fall/winter will be here and with that comes all kinds of colds and flus. I sent Dr McCrindle an email suggesting that if Tyson does qualify for the Gleevac study, would they consider ballooning or dilating his pulmonary veins during his cath procedure on Sept. 12 so that they are as open as possible before starting the chemo drug. He said Dr Benson (the cardiologist performing the cath) will assess the veins and may consider dilation or a stent implantation during his cath, but this may disqualify him for the Gleevac study. Having said that, if the stent is successful he may not need the Gleevac to keep his veins open.

We're not exactly sure how we'd pay for all the tests that will need to be done in order to prepare for the Gleevac study. First we'd have to send off CD copies of all his recent echos/MRIs/heart cath/chest x-rays, etc. to Boston for their information. Once they have all his info, Tyson would need an echo/lung scan/bloodwork/CT scan at Boston Childrens Hospital. (I'm not sure we want to know how much all that costs! So thankful for OHIP here!) After that initial testing there, Sick Kids can do all the follow-up testing and send their results to Boston. Brian doesn't have group health benefits so we're not exactly sure how much all this would cost but we know that the drug itself is paid for by the drug company. Good thing too! It's over $200 per day and the study requires being on the drug for 48 weeks...close to one year! If the drug wasn't being covered, we'd never consider being part of this study because that's way more than we can even earn in a year!

For more information explaining the Gleevac study, visit this website from Boston Childrens Hospital. Don't worry, it's very easy-to-read :)

http://www.childrenshospital.org/clinicalservices/Site683/mainpageS683P5.html

We'll keep you posted again once Tyson's goes for his heart cath on September 12 (pre-op on September 7.)

Mel:)




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