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!

Wondering if He's Coming Home Soon

Brian stayed at the hospital with Tyson last night while I went home with our other kids.  When we left the hospital last night Tyson had a brief episode of desaturations in the high 70s, but they did slowly come back up again to the low 80s.  After Brian and I last spoke last night before bed, Tyson was comfortable and sitting in the low 80s.  

But this morning Brian called me and said that Tyson had to be put back on O2 at about midnight.   He de-satted into the low 70s, even as low as 68-69 at about 11:30pm.  So Brian adjusted Tyson's positioning, turning him from his back, to his left side, to his right side in hopes that it was just a "fluke."  But after half an hour or so to now avail, he had to get the nurse and the respiratory therapist also came in.  All agreed that Tyson needed the O2 back on again to help him get through the night.  They were able to turn it off again by 7am but we're pretty certain that he won't be coming home yet today.  It seems like Tyson has been doing worse on his right side than on his left side.  Perhaps because his "good lung" is the one with pneumonia so when he's on his right side, the right lung is compressed and his "bad lung" (the left one - the one with pulmonary vein problems and less blood flow) is having to work too hard?  We're not sure.  This is just Brian's and my theory. 

I am really struggling with the emotional part of this  hospital stay.  For most healthy children, if they are hospitalized due to pneumonia, parents can get anxious and wonder when their child is coming home.  But each time Tyson is hospitalized, Brian and I wonder IF he is coming home.  In the back of our minds there is always that nasty, lingering question:  is this the beginning of heart failure?  Is this how everything is going to go down?  

I am writing my thoughts down today because I am having a hard time with things, and I may regret publicly displaying my thoughts and emotions later today, but I'm just having a bad day.  We're all allowed to have bad days, aren't we?  I've been praying so hard that God will bless me with more patience and trust than we've already been given but I have to be honest, it can be really tough sometimes.  I think in part it's because Brian isn't here with me right now to keep me positive and grounded.  While everyone else is going on with their merry life, going to weddings, and graduation dinners, and potlucks and golf tournaments, we are dealing with our son who's sick again, wondering not only when he's going to pull through and come home, but IF he's going to pull through and come home.  Having only half a heart means that it could decide to quit on him at any given moment.   It's tough to swallow that kind of prognosis at times, and yet at the same time we are so thankful and blessed for all the good times we have enjoyed over the past three and a half years.

I feel bad for Brian too, who should be out enjoying a round of golf today in the beautiful sunshine, and instead he's stuck in a hospital room with his three year old son.  Today we should be out enjoying the sunshine, working in the gardens, watching our kids splash in the pool, but instead I'm trying to get caught up on the 7 loads of laundry that have piled up over the week of me being away.  The house is upside down because we've been in and out all week long, running here and juggling there, with no time to clean up the mess that happens in the meantime. 

At the same time that I write this, I can hardly complain and I feel bad for feeling sad, because we've been so blessed with family and friends who are always so willing to help out where needed.  The three oldest have spent a few nights at friend's houses so they could continue on with the school routine.  They are expensive to feed!  My Mom has been great too, visiting us in the hospital often, so the days aren't so long.  And she even stayed overnight twice this week so that Brian and I could go home and actually have time to talk to each other.  One parent needs to stay with Tyson, and the other parents needs to stay with the other kids, so juggling can be difficult and Brian and I actually see very little of each other.   And then add into the mix a nursing baby who isn't sleeping that great in a pack n' play in the hospital and just needs to be home in her own bed.  So it is nice to have Tyson here in Orangeville hospital, as opposed to Sick Kids in Toronto, to make all the juggling a little easier.  Even still, it's not always "easy" and then there's the issue of dinner.  Who's cooking what and when?  

I will update more later.  Brian said Dr. Murphy just came in to talk to him again about the plan.  Brian is going to ask about an oxygen concentrator at home.  If it's just while he sleeps that he needs the help, maybe he can go home on oxygen?  During the days Tyson sats 82-84 but what about when he's up and active and playing?  Right now he's too tired to even make it to the bathroom on his own and usually de-sats a bit once he gets back into bed.  Ok, will update again later. 


1:30pm
Tyson is definitely staying at least one more night.  During his nap today they are going to see if laying him on one side versus the other makes a difference.  I wish them much strength with that, he does NOT like being woken up from his nap! 
Dr Murphy also says we should cut back on the amount of ventolin masks Tyson is having, as his heart rate has jumped up in the past day or so.  Today he's sitting in the 140s and usually when he's well it is in the 90s.  Ventolin does definitely increase his heart rate, but now that the pneumonia appears to be clearing up, we have to make sure his heart isn't too stressed either.  
Once my laundry is all dry, folded, and put away, we are heading out the door to switch shifts.  Brian will come home with the kids and I will stay overnight with Tyson and Addisyn.  (Addisyn does love her own bed!  She slept till 8am this morning in her crib, and had a 2 hour nap this morning :)  Hope we can all get home and back to normal soon. 

1 comment:

Linda T said...

Thanks for 'bearing' your soul here Melissa. Part of being in a communion of saints is that we 'bear one another's burdens'. It's easy to pray in general for 'Tyson and his family'. Knowing what emotions you're feeling gives us specifics to pray for.
Also, hopefully you'll be able to look back in years to come and see how God our Father has carried you through these difficult days!
In our thoughts and prayers, today once again!
Jay & Linda, etc.