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 Eight Post-Norwood - Extubation Day! Friday, December 12, 2008

"Be joyful always; pray continually;
give thanks in all circumstances,

for this is God's will for you

in Christ Jesus."

1 Thess. 5:16-18

Today I waited around all day for Tyson's extubation. (Well, kinda. I had some company throughout the day too. Gerald and Michelle came in the afternoon and then Derek and Lea came at dinner time.)
Tyson had to fast 4 hours before and 4 hours after the procedure so they stopped his feeds through the NG tube at about 3 am, expecting him to be extubated early on in the morning. Then they decided to give him a blood transfusion first so that his heart didn't have to work so hard after the extubation and he could concentrate on his breathing more. That takes two hours to complete. So he should have been ready to have the breathing tubes taken out by about 3pm but the Respiratory Therapist didn't come in till after 5:30 pm. Long story short, he was extubated just before 6 pm and put in a "head box" to get some moist air into his lungs so they don't dry out. This should be gone by morning and I will hopefully be able to hold my son!

That's all for now!
Mel:)







PEEK-A-BOO
Tyson in the headbox


(Please excuse the stupid placements of these pictures, this blog is really ticking me off! Every time I move something where I want it and then hit "save", it does it's own thing once I publish it!)

7 comments:

Anne said...

Nice to see him with his eyes open and the tubes out!! I'm glad you will be able to hold him soon and hear him cry!

Bernie and Joanneke said...

Hi Brian and Mel,
We are waiting in suspense for the news that you can finally hold your little son.
Have a joyful day today as you celebrate your parents anniversary!!
Bernie and Joanneke and kids

Anonymous said...

Hey there Brian and Melissa,
Glad to hear that Tyson has been extubated! YIPEE!!! Enjoy those first few cries, and all the ones that follow afterwards. I hope you enjoyed your first snuggle together...make sure you go and pump afterwards ;)
Congrats with your parents' anniversary!
Julia Meerveld

Anonymous said...

Oh, I meant to add that Tyson looks amazing. What a tough little guy! He looks so big in that incubator(I am only use to teeny tiny babes in there!) Hopefully he will be out in an open bassinet soon!
Julia

Michelle said...

So happy to hear that Tyson's tubes are out! And I really hope that the day will come soon when you get to hold and cuddle with your little fighter again! Still praying that God will continue to give you strength to get thru it all, and thanking Him for the blessings that He has already provided!
Hugs & Kisses to you all...
Michelle, Joshua, Evan, Tyler

Michelle said...
This comment has been removed by the author.
marge said...

Hi mel thanks for emailing me with the 'news'. I've read everything that you've written so far. What a roller-coaster and witness to the support God is giving you, through courage, patience and loved ones. We will pray for you and follow along with your blogs. Thanks for all the work you put into them.
A great big cyber hug to you both.
Mark, Marge and the kids