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 nine 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!

Day Four Post-Fontan

"Yet this I call to mind
and therefore I have hope:
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The LORD is my portion;
therefore I will wait for him.”
Lamentations 3: 21-24


Lounging in his crib, watching hockey with his Dad




Now he's in a big-boy bed, but who gave him the remote?
And here I thought once Brian goes back to work it would
be MY turn for the remote....



Up and walking around a bit....he's getting there....baby steps:)

Tyson had a very good day today. We have been able to stay on top of the pain medication so that makes a huge difference! He's also eating more; not quite as much as normal but he's certainly getting there. Because he's eating better, his strength is also coming back. He was able to stand by himself on the weigh scale today holding on to the hand rails. He also walked the length of the hall holding onto Brian's and my hands. Definitely making progress!

Tyson's spirits were really good today too. It probably helped that he was able to spend some time with his older siblings. Mom and Dad Spanninga came by for a visit and took Braden, Merrick, and Kenya with them. The older ones spent some time at the PlayPark and then the afternoon at Marnie's Lounge; a favorite for all of them. Even though Tyson couldn't leave the ward to join them for those fun times, he enjoyed a nice long nap this afternoon instead :)

Tyson is still on a fair amount of medication. His puffers have been started up again since his chest has been rattly-sounding, but he's so far only needed to Ventolin mask (nebulizer) once yesterday. They have ordered it for "as needed" but today he was ok, only needed the blue and orange puffers.

He's also on Coumadin (warfarin) now, which is a blood-thinner that he will need for the next few months, until his fenestration is closed in the cath lab. We crush this pill and give it to him with his yogurt at dinner time. Since warfarin can be hard on the tummy, we had to wait till he was eating enough at dinner time. So today was his first time taking it and it went down no problem at all. (Blood thinners are much easier when children are old enough to take it with food...no more Enoxaparin injections!)

He also takes Lactulose, a stool softener, because his belly is pretty distended and probably caused him some discomfort. Morphine and other pain meds can constipate, but his bowels started moving again today, after a nice glycerin suppository. I gotta tell ya, I should get an automatic RN degree just from all the things I have learned and have done in the past two years :)

Tyson has also been started on another antibiotic Cefprozil, because yesterday his incision was oozing and it appears infected. This is an oral antibiotic, not through an IV like last time; so that's not going to keep him in the hospital any longer. What's keeping him here right now are two things:

1) His JP drainage. He is draining a LOT. Yesterday and today he drained over 300 ml of fluid from the drains. That is over a cup of fluid coming from somewhere inside his chest every day. Most Fontan kids will drain a great deal. One nurse tells us it's not the amount of fluid that drains which determines whether it's chylothorax but the colour. A milky, white colour is chylothorax. Chylothorax would mean a longer stay here on 4D, and a low-fat diet for 4-6 weeks until the lymph node heals. Chylothorax is leaking lympathic fluid caused by a nick in one of the lymph nodes during surgery, that is worsened by high-fat diets. The leaking will stop in 4-6 weeks once the diet is managed. So far Tyson's drainage has been red and translucent, until today it looked a little cloudier than normal :( Another nurse tells us that if his JPs are draining that much every day, it's most likely chylothorax. Well, they test for chylothorax on Day Five post-op, and tomorrow is Day Five. So hopefully by tomorrow we will know more...although tomorrow is Sunday so I'm not sure if we'll get results then.

Basically, we absolutely cannot go home until those drains stop. And only God knows when that will be. If they slow down soon and stop in the next few days, we could be home as early as next weekend. But if they continue, we are stuck here for the long-haul. One little boy we met in November who had his Fontan in September, was here for 8 weeks because there was so much drainage. So I am getting my mind geared up for a lengthy stay, and if I'm wrong...extra blessings!

2) The other thing prolonging his stay is the Coumadin. Since tonight was his first time taking it, he will need to have his INR levels checked by blood work in two days. Then if the amount of Coumadin needs to be adjusted, it would be another two days before they test again. They keep adjusting until they get the level right, then send us home (as long as the JPs are done draining.) Once we are home, we would need to make weekly appointments at a lab to have blood work done to double-check his INR levels. Then we'd just call in the results to Sick Kids and they would tell us if the Coumadin dose is correct or if it needs adjusting.


All those uncertainties aside, the progress Tyson has made today makes my heart just soar! I was so happy to see him bearing weight on his legs and beginning to walk. He didn't enjoy it too much, but if we stopped doing things just because he cried, he'd never eat anything or take meds or get up out of bed at all. He is happier lounging around watching hockey. *sigh* ANOTHER hockey fanatic in the family! LOL He was honestly mad at me and Brian today because there wasn't a channel that was showing a hockey game. Now he is back in his element though, watching the Leaf game with his Dad while I get away from his room for a bit and use the computer.

We even saw a few smiles from Ty today :) He's getting there folks!

In your prayers tonight and for the next day or two, please pray that the chylothorax tests come back negative and that the JP drainage will stop soon.

Thanks so much for your prayers :)

Brian and Mel:)





2 comments:

Aukema Family said...

So great to get these updates and know how to pray for you all :)
Keeping you in my thoughts all day, praying love the Aukemas

Anonymous said...

Hi Guys,
It is great to hear how well he is progressing! We pray that he will continue to get better, and hope that you can get home sooner than later.
Gerald, Michelle & Family