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!

It's Almost September...

I've had butterflies in my stomach now for almost a week, just thinking about the fact that September is almost here.  In two days the calendar page flips over and a new month begins.  On September 3 my half-hearted warrior will step onto the big yellow school bus for his first day of Kindergarten and be apart from me all day long.  All day long.  ALL. DAY.  LONG.  I'm so not ready to let him go, and I honestly don't think he's even ready to enter the big wide world yet, but I know I have to let him go.

Tyson on the other hand is SO EXCITED!  The fact that he is so excited is definitely helping me cope, but I still want to cry.  I think most of my emotions are from the anxiety and fear of letting him go, of what could happen when I'm not around, and of what kinds of illnesses he could pick up at school.  But I have to trust that the staff at DACS understands the seriousness of his medical needs, that the school society as a whole understands, and most of all I have to trust that Tyson is always in God's hands, even when he's not holding onto mine.

I wanted to share with you something that I stumbled upon tonight that is making me feel a lot better about it.  I don't know what it was that led me to the big white binder on my shelf containing Tyson's Hospital for Sick Kids medical records, but in any case I started leafing through the pages tonight for the first time in probably over a year.  Whenever Tyson has a medical procedure like an ECHO, ECG, chest x-ray, MRI, cath, or open heart, I ask the records department for copies of his reports.  I like to know exactly what's going on in his heart and how his pressures are changing or stabilizing, or what have you, so that there are no surprises for us down the road. I also like knowing what the cardiologist is talking about and what kind of questions to ask when he explains Tyson's heart to me.

Anyway, this is what I came across in a letter written by Tyson's cardiologist to his family doctor (he updates the family Dr after every clinic visit or ECHO to keep the family Dr up to speed on Tyson's heart health.)

Report to Family Dr on Tyson's June 23 heart catheterization
"At this point in time the surgeons were reluctant to readdress the pulmonary veins through surgery ...however it was felt that he should be referred to the cath lab again to have the pulmonary veins reassessed for any progression of the stenosis...In the meantime however, a longer term plan would involve cardiac transplantation either into a right lung only or with concomitant transplantation of the left lung."  

For those of you who may not understand, this means that there is nothing more that can be done about Tyson's pulmonary vein stenosis, and he will eventually need a heart transplant - which would either be connected to only the right lung (his good lung) or they would do a heart and lung transplant at the same time.

This is absolutely no surprise to us.  We've known about this since that cath in June 2011.  He had another cath in January 2012 - the one when I was 8 1/2 months pregnant with Addisyn - and this cath confirmed that indeed, there was nothing more that can be done for his heart.  When his heart starts to fail, he will need a heart and lung transplant.  This is so scary to put into words. 

But I am pleased to say that it's been two years since the surgical team came to that conclusion.  We've enjoyed two more years with him, without even being listed, without going into heart failure, without any major complications.  Ok, so they can't close his Fontan fenestration because his pressures are too high.  Ok, he's been hospitalized twice since then because of pneumonia.

BUT IT'S BEEN OVER TWO YEARS and he still has the SAME heart! 

Another reason why entering September is making me nervous is because on September 20th, Tyson will be intubated and put under general anesthetic for a cardiac MRI at Sick Kids.  I'm very anxious for the results of this MRI to find out if his pulmonary veins are behaving themselves!  (Echos aren't a good picture of his pulmonary veins - veins that carry oxygen-rich blood from the lungs to the heart.)  More info about his MRI here.
Tyson will miss some school because of this, because if he catches a sniffle the procedure will be cancelled.  I'd really like to have the MRI done and over with and get the results by his next cardiologist appointment in November.  So he might only get to go to his first week of school before our house goes in lock-down mode :(  It's been a long time since we've been in lock-down and I sure don't miss it. 

Please pray for health and strength for Tyson as he starts school, and for health for our whole family so he can have his MRI in good timing.

Pray also that Tyson will not be anxious about his procedure. We haven't told him yet because he hates needles and IVs and every time we mention Sick Kids he thinks we're going there for the doctors to open his heart.  I don't want him to be uptight about it for weeks beforehand.  We will obviously have to tell him something when he realizes he's missing school.

We will pray for the right timing and the right words.

2 comments:

Anonymous said...

We will pray for Tyson. Hope he has a good experience at school.
Love Uncle Roy and Aunt Yvonne

Steph said...

Praying!