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 Two Post-Glenn - Thursday, May 14, 2009

"Be still before the LORD and wait patiently for him." Psalm 37:7
Today was a pretty uneventful day in Tyson's recovery process. He has not moved too far forward today at all. Because he had such a terrible day yesterday, he is pretty much exhausted and he spent most of his day sleeping.
Although they have turned down the settings on the ventilator, he is still fairly reliant on it and his oxygen saturations are not very good at all. He has stayed in the low 60's all day. The only time I saw him go to the 70's was immediately after physio therapy on his lungs, which happens three times a day right now. (It involves some percussion exercisers on his chest and some deep suctioning with a vacuum-like tube to remove secretions.) The doctors are pretty baffled and have tried experimenting with the settings on the ventilator. They have turned the oxygen concentration levels up and down, experimented with the PEEP settings (pressures), the SiMH rate (resp rates) and nothing has worked to improve his sats. Sometimes it takes a few days for the body to get used to the new pulmonary blood flow as it changes the whole way the blood circulates. We just have to wait it out and if it doesn't improve in the next few days, Tyson will go for another heart catheterization. He had a heart cath done in March in preparation for this surgery. It is done in the CDIU (Cardiac Diagnostic Interventional Unit - or "cath lab") here at Sick Kids and it involves sending a catheter through his groin into the heart to measure blood flow and pressures, etc. This may tell the doctors more about why his sats are not improving.
I am feeling a little scared about this because the last time Tyson was in the hospital with pneumonia, I met a woman whose son was in the hospital for over 3 weeks because his sats were not improving and no one could figure out why. Other than that, he was healthy and eating well but he just couldn't bring his sats up so they were applying for home O2. I am really hoping that something can be done about Tyson's low sats and we won't have to resort to going home with him on oxygen.
Tyson has had a few chest x-rays today to see if maybe extra secretions are causing the low sats. The right lung collapse is almost totally re-inflated. The re-intubation helped with that, so that is one good thing about the ventilator. However, his lungs are still very wet looking and they have increased his dose of Lasix (or Furosemide, a diuretic to make him pee) they are also going to try putting him on an additional diuretic to try to get rid of some of the extra fluids. He gets 3 oz of breast milk every three hours round the clock, through the Ng tube.
So....here I sit.....waiting for a change in his condition. It sure takes an extra measure of patience since this whole time we thought Tyson was such a fighter. I'm sure he won't be intubated for the rest of his life but his recovery time may take longer than we anticipated. They won't be extubating him anytime today anymore but they will continue to turn down the settings on the ventilator overnight. If his sats are going to stay low with or without the ventilator, they might as well extubate and then figure out the problem with low sats later. I'm not 100% sure what the plan is as far as extubation, but I do know it won't be today or tonight.
Please keep praying guys. It means so much to us to have the communion of saints experiencing this with us. We could not get through this difficult time without the prayers of the people and the help of our Heavenly Father, who knows our every need even before we ask!
Take care, (and Brian: I LOVE YOU!)
Mel:)

11 comments:

Anonymous said...

still praying....
k

Mel said...

Tomorrow is another day...keep positive and keep trusting!

gerryandmargaret said...

what a difficult day!! it's so hard to see our little ones hurting and more so when there's nothing that we can do to help! We will continue to remain in prayer for Tyson and you and Brian. It is difficult to endure when things don't go as we want them to but as you know our Father has a plan for Tyson and will uphold him always. May you be granted much patience and trust in this time! You remain in our thoughts and prayers!

Gerry & Margaret & kids

Psalm 34: 1-7

I will extol the LORD at all times; his praise will always be on my lips. My soul will boast in the LORD; let the afflicted hear and rejoice. Glorify the LORD with me; let us exalt his name together. I sought the LORD, and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame. This poor man called, and the LORD heard hime; he saved him out of all his troubles. The angel of the LORD encamps around those who fear him, and delivers them.

Joanneke said...

Dear Mel,
You are constantly in our thoughts and prayers. Where would we be without the help of our heavenly Father who knows all things? Tyson is lovingly carried in the palm of His hands. There is no better place for him than there.
Thinking of you,
Joanneke
Psalm 18:1,2
"I love you, O LORD, my strength. The LORD is my ROCK, my FORTRESS and my DELIVERER; my God is my rock, in whom I take REFUGE. He is my shield and the horn of my salvation, my STRONGHOLD."

Scott and Tanya said...

Thinking of you and praying for you!

Jeff said...

We have not forgotten to keep you all in our prayers. Thinking of you from over here.

Hetti said...

Hey Mel,
It sure can be difficult to wait for answers and positive results, but be encouraged...The Great Physician sees every detail of Tyson's condition even when you can't, and He cares for you all! We continue to keep you in our thoughts and prayers....hang in there, Jeff and Het

Anonymous said...

Hey Mel
Thinking of you and Tyson everyday and praying always.
Lea and Derek

Gwen said...

May you continue to draw strength from our all-powerful God! Keeping you all close in thought and prayer every day.
Love and blessings to you,
Ed, Gwen and kids

Anonymous said...

Will continue to pray for you and your family. The fear of the unknown is always the worst. May God continue to give you strength
Richard

Anonymous said...

Brian and Melissa, Ed and I are praying for you and your family! May God be with you and grant you what you need in this difficult time as you sit by your sons bedside! I hope he recovers quickly and that you might return home soon!