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!

On Cloud Nine...

We are just so excited and flying high on cloud nine today!  Tyson had his regular cardiologist appointment today as well as an ECG (and dreaded blood work) and everything is looking great.   His O2 sats are about 87 and his blood pressure and heart rate are both good.  After answering all the questions about his activity and energy levels, his eating and sleeping patterns, etc. and seeing how he is doing so well clinically, Dr McCrindle decided that Tyson doesn't have to go back to cardiology for...


 SIX MONTHS!!!

Can you believe it?  I am still in shock!  I was just mentioning to Mom this morning how it had felt like forever since we'd been to Sick Kids, and that was only a three month break.  But SIX months?  How will we ever survive six long months without Sick Kids?  ;)

When I looked at the appointment card for Ty's next appointment, I choked up a little when I saw "November 28, 2012."  That means Tyson doesn't go back until after he turns FOUR YEARS OLD!  Yahooey!

Dr M and I had a little discussion about Tyson's heart rate.  Brian and I noticed that his heart rate has slowed down considerably in the last week or so.  The reason we know this is because as we've been weaning Tyson from his asthma medications, we've been checking his O2 sats very regularly to make sure he's tolerating it well.  His heart rate used to be around 120s when active, about 80s or 90s when sleeping.  In the past week or so, since being off the asthma meds, his heart rate is in the low 50s when sleeping.   But since he's having no other alarming symptoms - dizziness, fainting, extreme fatigue, headaches (he does get these occasionally) loss of appetite, sleeping more than usual -  Dr M assured us it's still in the normal range and we shouldn't worry.  It's common for the heart rate to decrease after the Fontan as the child gets older.

 Tyson's energy levels have been good, he's still sleeping and eating well, and has now been totally weaned off his nebulizer mask :)  He remains on the Singulair and then we will see the respirologist again in June to make sure things are still under control.)

We also talked about the Gleevac study in Boston again (a study involving a chemotherapy drug to stabilize pulmonary vein stenosis.)  Dr M believes that Tyson's PVS is primarily anatomical (the veins are small because they are being squeezed by other heart anatomy - the aorta) rather than intraluminal pvs (the abnormal thickening of the inside walls of the veins, which rapidly occlude/block the veins completely.)    Dr M has not completely ruled out Gleevac as a possibility for Tyson, but because of the side effects that a chemotherapy drug can have on young children, the risks would outweigh the benefits at this time.  Tyson is clinically well and it seems that the PVS has stabilized at this point, so he's not at all in need of Gleevac at this time.  Dr M spoke about a conference he attended with the Pediatric Heart Network, where cardiologists and surgeons from world-renowned hospitals meet.  There were representatives from Boston Children's Hospital there, the hospital which spear-headed the Gleevac study.  Dr M spoke with them about the Gleevac study and he has not put this option out of his mind.  I have been sending him links about the study and clinical evaluations from Boston itself, and he smirks when he talks about the emails he gets from me.  When I apologized to him for "hounding the cardiologist," he smiled and said, "I don't consider it hounding at all.  I consider it a parent advocating on behalf of their child."  So glad to hear him say that!

Oh, and he said, "I'm willing to bet that Tyson is going to stay like this for a long time."  THAT is great to hear too :)  No transplant talk in the near future :) 

I still just honestly cannot believe it!  SIX MONTHS!  Seems like a lifetime...