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!

Slow progress...


Tyson is still struggling with the pneumonia.  The oral antibiotics are taking a long time to fully clear his lungs (and he was even on double the amount he should have been on for his body weight.)  He is sloooowly getting better, but still coughing and wheezing a lot and still having ventolin masks every four hours.   He's happier than he was last weekend, but he still doesn't have great amounts of energy and mostly does quiet activities at home, otherwise he starts coughing too much. 

We saw our family Dr today for a follow-up appointment.  This is common practice for us to make sure the infection has cleared.  The Dr can still hear pneumonia on the one side, so he prescribed Tyson 7 more days of antibiotics. We're thankful that Tyson's O2 sats are relatively stable (they get pretty low at nights when he's sleeping but still at or just above 80.)  So he won't need to be hospitalized for IV antibiotics or oxygen at this time.  We're praying that the oral abx are enough to kick this infection in the butt and return our little guy to his active self soon.  He hasn't gone to school all week and when we were there on Tuesday afternoon for his teacher's baby shower/good-bye party, he clearly overdid it and was completely zonked that evening and the next morning.  It was almost like he took a step backwards just from being in the gym and throwing a basketball around. 

We are having to check his INR level every other day because the brilliant ER doctor not only gave him double to amount of abx for his body weight, he also prescribed one of the worst abx that interferes with coumadin.  Before leaving emerg, I had the prescription in my hand and asked The ER doc, "Are you sure this one is ok to have with coumadin?  He's never had this one before."  And the Doc replied, "All abx interact with coumadin."  Well, I learned today from the family Dr that Biaxin is one of the worst ones for sending INR levels way out of whack.  In fact, when he entered Biaxin into his computer as if to write a prescription for Tyson, it gave him a 'warning' about prescribing Biaxin for Tyson.  He had to do so anyway, since switching abx part way through is not helpful at all.  So Tyson will have Biaxin for another 7 days.  Only this time he'll be taking half of what he had this week.  He's supposed to have 15 mg per kilo per day...Ty is roughly 17 kilos...that's 255 mg per day.  Tyson was originally prescribed 500 mg per day.  Which also contributes to his INR level being way too high and of course he got a nosebleed yesterday!  None today thankfully....

And in true Tyson fashion, his illness means our weekend plans change again.  Last weekend I missed out on the Labatt Family Heart Centre Conference at Sick Kids and this weekend we had to postpone our mini-get-away that we planned for our kids.  We were planning to pick the kids up from school at noon and go away till Saturday night, but had to cancel because the Dr felt it was best for Tyson to be fully recuperated first.  Of course this makes prefect sense, and it is what's best for Ty, but I'm still disappointed nonetheless.  It's a *really good thing* we didn't tell the kids about our getaway because at least they aren't disappointed and they don't know any better at all!!  This would be case-in-point why we never tell our kids anything until we *know* they're actually happening.  So we'll wait for Ty to be fully recuperated so that he can run around and go crazy like a five year old boy should.  

That's the update on our little man.  We're thankful that he can continue to fight this infection at home.  In your prayers, please pray that the antibiotics do their job and that he can start feeling back to normal again very soon (with no more nosebleeds!) 
Melissa

1 comment:

Scott Bouwers said...

Please do your job antibiotics!!! Hope Tysons kicks it in the butt! Glad to hear that there is progress.