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!

Day Five Post-Fontan

"You will keep in perfect peace him whose mind is steadfast,

because He trusts in You.

Trust in the LORD forever,

for the LORD, the LORD, is the Rock eternal."

Isaiah 26:3,4

Tyson had another great day today! He is being weaned off the morphine slowly, because it was causing him to go into a very deep sleep, which was lowering his O2 sats. That is also why his sats were so low during the sedate echo, he was in a very deep sleep. So today he has been off the morphine now since 9:30 am and he is still in a pretty good mood. This afternoon he was walking all around the fourth floor without holding onto our hands. “No! Me do!” He kept saying to me. He can’t walk too fast yet, but that’s mostly because we have to follow him with his “leash”, the O2 sats probe and portable monitor. The ECG leads have come off today too, which means they're not concerned with his heart rate. So now he’s left with only the sats monitor and the two chest tubes.

We also received some GOOD news and some GREAT news today J The good news is that the drainage from his JPs came back chylothorax negative. Wohoo! No low fat diet for him! We heard from the Nurse Practitioner Jenny that if it WAS chylo postiive, he would be put on a stringent low-fat diet for 6 days to try to slow down the draining. If after 6 days there was no improvement in the drainage, he would be taken completely off all food and put on TPN, through intravenous!! I am SO glad the chylo came back negative!

We also received some GREAT news. And that is: once we’ve been trained on how to empty the JP drains ourselves, Tyson is allowed to come home with the chest tubes still in! It will be very different having him running around the house with two JPs hanging off his pants, (we clip the JPs to his pants so they don't pull on his chest) but to recuperate at home and spend Christmas at home as a family will be AWESOME! I couldn’t be happier right now J Having JPs to worry about will definitely be different for us, but I’ve done the Ng tube, portagen feeds, pumping breastmilk for 6 weeks, Enoxaparin injections, and 7 different medications…we can do the Jps too J

Tomorrow Tyson is having blood work to determine his INR level, and we might have to wait a few days to get the Coumadin dose correct for him. And they are also going to check his triglycerides and albumin. If his albumin level is low from there being so much blood loss from the JPs, he may need a blood transfusion before going home. This would also bring his sats up higher because he would have fresh, oxygenated blood. I am not entirely sure when exactly we can go home, but at least it is in the conceivably near future. I would LOVE to be able to attend Merrick’s Christmas assembly on Thursday but that might be pushing it. I’m hoping someone can videotape it for me, please?

Jay and Mel came for a visit today and brought us some apple pie and some other nice treats :) We also are allowed to use a spare laptop from Avertex for the duration of our stay! This will be so nice, to be able to be on the Internet without having to leave Tyson's room.

We’ll keep you posted with any news about our return trip home.

Brian and MelJ

10 comments:

Anonymous said...

Glad to hear all is going so well!! We pray that he continues to get stronger and that you will be able to be home to spend Christmas as a FAMILY!!

Gerald, Michelle & Family

Joanneke said...

Wow! It hasn't even been a week and you're already talking about going home in the "conceivably near future"! That is truly amazing!! If you're not able to be there on Thursday, I can videotape it for you.
We will continue to pray for Tyson's complete restoration and that things will continue to progress well. We'll also pray for you, Mel, as you have to take care of Tyson by yourself this week. Sterkte!

Anonymous said...

Awesome to hear such positive news! Glad things are going so well, so quickly! I (A) also love the text you chose - it's become one of my new favourites!
With love, thoughts, and continued prayers, Garth and Alida and family

Aukema family said...

Praise God from whom all blessings flow .... great great great great news. Praying all continues to go well and you'll be home in a week.

Anonymous said...

That's incredible! All praise and thanksgiving to God. Continued strength and a big HUG!
Marg

Anonymous said...

Such great news to hear. But,it's even greater for you to experience. Praying you will soon be home. The Lord is Good!
Betty Bouwers

Anonymous said...

Yipee! Absolutely fabulous news!
We hope and pray everything will continue on so well!
k

Anonymous said...

Haven't checked your blog in a couple of days...amazing!!such good news!!! Thanking God with you and continuing to pray for you all.

Hetti

Garth said...

Just looked at some of the blogs early on in his life. What a journey!! God is indeed good and gracious!!

Garth

Anonymous said...

Wow! Talking about coming home already! How amazing would that be?
God is good!
I had planned on videotaping the performance on Thursday afternoon as well, so if Joanneke forgets, we'll have a copy too!
Love and prayers to you all!