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 Eleven Post-Norwood - Monday, December 15, 2008

"Sing praises to God, sing praises;
sing praises to our King, sing praises.
For God is the King of all the earth;

sing to him a psalm of praise."
Psalm 47: 6,7

I am just FLYING today! Things are progressing so well that we may be headed for the much-anticipated fourth floor by as early as tomorrow!
This morning when I came in to see Tyson he was back in the headbox. The CPAP was really annoying him and he had quite a fussy night. He couldn't settle down into a deep sleep so they took him off CPAP and put him back in the headbox. He is doing well there and there doesn't seem to be any reason why he should need to go back on CPAP.
When I came in after my "lunch break" he had been taken out of the head box and he is doing just fine on his own. The doctors are very pleased with his respiratory progress considering where he was on Saturday.
His central line (in the neck) has been removed and they hope to remove his arterial line soon too. When he moves up to the fourth floor, the only lines he will have is his PICC line and his NG tube. YAY! He is really starting to look "normal" again!
I had a look at the x-rays of his lungs that they took early this morning and guess what?!?! The fluids are disappearing and his left lung is back to normal again! So excited for this step in his recovery. Looking forward to moving up to the fourth floor soon!
Also, once the fluids are totally gone and stay gone for a while, there is no reason why he should need to continue on the portagin so I will definitely be talking to the head Dr. again about putting him back on breastmilk. He is too skinny and they need to fatten him up some more.
They've also finally increased his feed again....for a baby who was being breastfed prior to surgery and getting the exact amounts he wanted, to going with small amounts of portagin, he was quite hungry. I kept telling the nurses that they need to increase his intake because he kept chomping down on his soother...but I guess they can't increase it too quickly especially with fluid in the lungs, for fear that he might asperate. So they are increasing the quantities a little quicker now, and soon should be back up to the minimal requirement of 2 oz. Personally I think he needs even more than that (based on what my other babies ate at this age) but we have to wait and see how his tummy tolerates that first. This afternoon he was given 45 mls (an ounce and a half) and he had that digested within no time!
I am so happy with his progress and can't wait for my kids to be able to see him! Once he is on the fourth floor, and in his own room, they can visit him anytime they want! Hoping for a really nice weekend with them if all goes well.
Thanks so much for everyone's prayers and support. They mean so much to all of us!
Till tomorrow,
Mel:)

8 comments:

Sara said...

We keep praying for you and your little guy! So glad you got to hold him...it does almost make things harder. I remember what it was like being the mom and not getting to call the shots about your own child. May we all keep focused on our Lord, the greatest physician who is carrying Tyson and Lord willing some day you can look back on his first photos and this blog while he stands next to you...6'4, 210 lbs and a super healthy guy heading out to play hockey with his dad and brothers.

Vicki said...

So thankful to hear that things are progressing well! God is good! Can't wait to see the little lad!

Henry and Jules said...

Wow what great news Melissa! We are thankful that all continues to go so well. God is great!
Julia

Anonymous said...

Hi Mel
Although you haven't heard from us yet, we follow the news eagerly. You continue to be in our thoughts and prayers. The Lord has indeed been gracious!
with love from neighbour Marg

Anonymous said...

Great to hear Tyson is picking up so well. Hope you get to the fourth floor very soon, so the family can be together again. Praise the Lord for His goodness!Betty Bouwers

Jeff and Annette said...

Hi Mel. It is great to hear that everything is progressing nicely. We really hope and pray that things continue to do so. We have not forgotten about you guys. Jeff and Annette.

Jeff and Karen said...

Hey Mel!
We are thankful to hear that things with Tyson are progressing nicely! We can't wait to come and see you guys again.....not sure when, but we hope to soon.
Keeping you in our prayers.
Love
karen

Bernie and Joanneke said...

Hi Brian and Melissa,
Its so good to read how well things are going! I can't wait to have a peek at him tommorrow (Wed), and hopefully that will be on the fourth floor.
You're in our prayers!
Love,
Joanneke