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!

Post-Op Appointment Update # 1

Today was a pretty short day in the Sick Kids world. We were there by 7:30am and on the road again by 11:30am! Record time! Although the results from today's tests came back quickly enough, we're not too sure we like the news we've heard today :(
Tyson had a number of post-op tests today, as well as a visit with the nurse practitioner (NP.) He had blood work done to check his INR levels, which are a little on the low side. We have to do some tweaking of the Warfarin before we get it perfect. The chest x-rays revealed that the lungs look a little wetter than when we left last week, but on examination Tyson's lungs sound good. He isn't coughing or wheezing, and we always keep a close eye on these sorts of symptoms anyway. Changes in breathing can mean the fluid is aspirating into the lungs. Tyson also had an echo, which he laid perfectly still for, for over 20 minutes! I am hoping this means his next full-scale echo doesn't require sedation...that would make life so much easier for us! Anyway, the echo revealed that his fenestration is still open (which is good) but the mitral valve (between LA and LV) is leaking more than it was at the time of surgery. This may or may not be serious, however, we were told that after the Fontan the leaking would stop since the pressures in the heart would be completely different.
Tyson is feeling well other than the draining. He's still draining over 130 mls per day. But he hasn't been on any pain meds since Monday, which is awesome considering he still has a chest tube. Usually that still causes a fair amount of pain. He is ok with it, as long as we don't touch it or put pressure on his chest. We may not lift him under the arms for 6 weeks post-op, or pull him up by the arms, so we have to scoop him up under his bum and head. It's not too easy to do, and very awkward to get him out of his stroller or car seat.

The NP Kathleen, upon consultation with the cardiologist, decided not to change anything with Tyson's meds or diet at this time, but let us stay home to enjoy the holidays. BUT...if the draining does not stop or at least significantly decrease in volume by next week's clinic appointment on Thursday, we've been told to pack our bags :(
Tyson has been on the minimal fat diet for a week now and there has been no change in the amount of drainage. Usually that's a good indication that we're in it for the long haul. So they let us go home to enjoy the holidays with our family, but it looks like we may have to stay again starting on Thursday. They're not sure what the plan is with him yet. Since he isn't technically chyle positive, they aren't sure if following the TPN route is the way to go (Total Par-enteral Nutrition: no food or drink by mouth, not even water or chewing gum...and he is fed intravenously for a few weeks until the draining stops.) In this way they bring his entire digestive system to a hault to see if that helps the drainage. I have no idea how that works, but apparently it does. They also talked about prednisone, a steroid which can help minimize the draining. It depends on what the team of cardiologists decide to do about Tyson's condition. Since he is chyle negative, they might not even start TPN or steroids but do a heart cath instead to make sure it isn't cardiac related. Kathleen said that Fontans do drain a lot, because sometimes the lymphatic system gets stretched during surgery and it takes a while for it to heal. There may have been damage to it and it will need to be repaired surgically, but a heart cath will tell them if that is the case. Kathleen also mentioned that a heart cath will also tell them if these problems are related to the pressures in the pulmonary artery. The Fontan changes the direction of the blood flow. At this point, the oxygen-poor blood from his upper and lower body is not being pumped to the lungs, but it flows through the lungs only by the pressure that builds up in the veins. So now his left side is responsible only for supplying blood to the body, while blood to the lungs gets there by natural flow. So as of right now, his pulmonary artery is receiveing waaaay more blood than it ever has in the past two years, so there might be too much pressure in the entire pulmonary branch (pulmonary artery, veins, capillaries) so it could be causing too much pressure in the lungs, thus the excessive draining. I'm not sure how much of that most people will understand, since I am still trying to wrap my brain around it myself. But either way, if it's a problem with the heart itself, the heart cath will give them those answers.
So we might get to Sick Kids on Thursday and be told we are staying put for a few weeks while they try the TPN or steroids, or they might tell us to come back the next week for a heart cath procedure. At this point we don't know yet. But we'll be packing our bags and preparing for a long stay.

We'll see what next week brings. Maybe there will be a miracle and the draining will stop by then????? LOL Not likely, it looks like we're in it for the long haul!
Please keep this matter in your prayers. It would be great if the draining would STOP and we could go to Sick Kids next week for a JP pull instead of a long stay!
In the grand scheme of things, we have to look at this as only a minor inconvenient complication of the Fontan surgery. It certainly could have been much worse, and at least this isn't a life-threatening complication. It just sucks:( It wouldn't be fun to have to be back in the hospital for what could be a few weeks, and to have Tyson on TPN and not allowed to eat or drink. He seems too healthy to be in the hospital at this point!
As always, we entrust Tyson into our Father's hands, knowing that He has all things under complete control :)
Mel:)
"Who of you by worrying
can add a single hour to his life?"
Matthew 6: 27

2 comments:

Jay and Mel said...

What an inconvenience!! :( But as you say, at least it is not serious. Praying for healing for Tyson and for strength and patience for you all! God can work wonders in a week!! :D

Anonymous said...

You've got a great perspective Mel! God is good all the time, despite the outcome :-)
Thinking of you lots - sorry we couldn't connect this week!
Alida