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 Seven Post-Glenn - Tuesday, May 19, 2009

"Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.
Be joyful in hope, patient in affliction, faithful in prayer."
Romans 12:11-12
Tyson had a pretty ok day. After his chest physio this morning, the physio therapist suggested we put him in this cool blue rubber chair to see if he would enjoy sitting up. HE LOVED IT! HE SMILED AT ME FOR THE FIRST TIME IN A WEEK! Vicki was there to witness the big smiles and he even gave her a few too! Tyson was also given a few toys to play with too which he seemed to enjoy.
Unfortunately he may not get to enjoy holding the toys for too long since he keeps wiggling the peripheral lines out of his hands and kicking them out of his feet. They took the central line out of his neck since it was causing discomfort and instead put two in his feet and one in his hand. But he keeps on kicking or wiggling the lines out somehow! Last night he had two lines replaced, since they both came out of his hands. So they put one back in his hand and one in his foot (his big toe, actually.) Today he managed to kick the one off his foot and the one on his hand might need to be replaced too since he somehow wiggles it out. He is a brat! The bruises from his Enox needles are finally almost all gone but now he has bruises all over from all the IV lines they keep having to put in! He's also had his hands restrained the whole time so that he doesn't yank out the breathing tube but sometimes when we let his hands go for a minute while he is getting physio or being repositioned, he sneaks his hand to his face to pull at things. And he is so quick too! He almost self-extubated today!
His chest x-ray looked better again today and the pneumonia seems to be clearing up quite nicely. The cardiologists are happy with his progress and are amazed at how much better he looks today. And he sure was happier today than most days, only crying when they suctioned him or did physio. He also was awake for a good part of the day and had good long naps throughout the day too.
His sats are still low, in the high 60's for the most part today. If his x-ray improves again tomorrow, they will try the t-piece on the ventilator again to see if he would be ready for extubation soon.
A nurse practitioner talked to me today about some of the results from his bronchoscopy that he had done yesterday (the procedure where they sent a camera into his bronchials.) Apparently one of the main airways in the left lung is compressed. This could be totally unrelated to his heart condition, he could have been born with it, OR it could have happened during surgery when the pulmonary artery was widened and the artery is now compressing against the airway. It's impossible to say for sure why he has this, but it could be a reason for the low sats as well. It's difficult to say for sure whether this is the cause, since we are still waiting for the pneumonia to clear up first. Apparently the moraxella bug is a nasty one and it can take a few weeks for the lungs to completely heal after catching this bug. So right now it is difficult to say if the doctors are more concerned about the compressed lung or the pneumonia being the cause of the low sats. I guess they deal with one factor at a time and go from there. I am trying not to look too far ahead and am praying that the sats will improve once the pneumonia is totally clear.
Till next time, please keep praying for our little guy!
Mel:)

7 comments:

Joanneke said...

Thanks for the update, Mel! It must have been nice to have some company today. The days must seem pretty long, compared to the busyness of home. We continue to pray for healing, knowing that God has everything planned for our good.
Joanneke

Mel said...

He SMILED!!! Yay!! I'm glad you got some nice play time with him. Hopefully he keeps improving and that the pneumonia is what is causing the low sats.

Hetti said...

Good to hear that Tyson seems to be gaining some of his zip back...probably a good sign! All the best for tomorrow, we're still praying...see ya', Hetti

Anonymous said...

Hi Brian and Mel,
Thanks for keeping us all updated! I am glad to read that Tyson seems to be taking baby steps forward again! We will continue to pray that God will grant healing, patience and peace for Tyson and you as parents and for your other children.
Henry and Julia

gerryandmargaret said...

Thanks for the update - glad to hear he's getting better!!! and a smile! that's fabulous....always praying. God Bless.

Margaret

Sara said...

He is a fighter! Strength and joy at every smile God gives you & Tyson! A ray of sunshine through the clouds! We continue to pray for you and trust that the Lord has an awesome plan for Tyson!

Anne said...

Hi Brian and Mel:
Must be hard to watch Tyson go through all this and not be able to do much! Hang in there...hopefully soon you will be able to hold him and cuddle him and even nurse him! Praying that God will grant healing and that soon you can bring him home!