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!

Glenn Surgery Update #2

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
Again, we marvel at the goodness of God! Tyson was extubated (breathing tube out) this afternoon at about 3 pm. He had an oxygen mask on for a few hours afterwards, but was clearly unimpressed with it. It is connected to an elastic tie that goes around his head. At one point the nurse turned her back only to find Tyson yanking at the oxygen mask and he had it pulled 6 inches away from his face with both hands! They didn't think he would appreciate it snapping back across his face, so they decided to go with the nasal prongs instead. He is much happier with this, as are we! He will stay on O2 at least until tomorrow.
Tyson is progressing well, his sats are remaining in the 70s for now. His blood pressure is a little high but that is because he is very upset and in a fair amount of pain. He is on morphine and tylenol, but hunger is also adding to his frustration. He won't settle to sleep very well but soon enough he can have a bit of breastmilk in a bottle to see how well he will tolerate that. He has had about 3 oz of water and is keeping it down but his appetite is not quite satisfied with water. They usually wait 4 hours after extubation before giving anything by mouth but the nurse allowed Tyson a bit of water because his throat was probably dry from being intubated and he was showing his temper again. Later tonight they will allow some breast milk in a bottle and if he tolerates it well, I can most likely nurse him again in the morning. (YAY!)
Tyson looks healthier post-op this time around compared to last time because he is no longer intubated and he is fully awake, no sedatives at all anymore. The more alert they keep him, the better his chances of breathing well on his own. It is difficult for Brian and I this time around too. His last surgery he was a sick baby going into surgery and a sick baby coming out. Today he was a healthy-looking baby going into surgery and a sick baby coming out. So it's hard to see our smiling happy baby now crying and in pain. But one day at a time, and he will pull through. We've experienced God pulling us through it the first time and we know He will not let us down again. He will work this for our good, and Tyson's too.
I also asked the nurse the big question, "Is Tyson on any blood-thinners right now?" And she smiled and said, "Nope!" So this means that he is no longer needing the Enoxaparin, and we will not need to give him any more needles! The mitral valve that they repaired was patched closed but it wasn't an extensive amount of patchwork, so no blood thinners are needed at this time. If they had've replaced it with a mechanical valve, then he would have needed the blood thinners.
I will leave the update at this for tonight. Brian and I are heading to bed soon (probably once the hockey game is over....) We are staying in a surgical waiting room for the night. It's a small room with two couches that can be used as beds. We are thankful for some privacy, clean sheets and a place to lay our weary heads.
Thanks for your prayers. Please continue to pray for a speedy recovery, and that the doctors don't find some horrible chylothorax leak like they did the last time. (It took me a while to get to start nursing him and I would love to be able to continue!) Please also pray that Brian and I can cope with what lies ahead in Tyson's future, as it is still unknown.

Brian and Mel:)

4 comments:

gerryandmargaret said...

What a day!! Thanks be to our Father for a successful surgery! Praying for Tyson's speedy recovery and patience and trust to yous.
May you rest well tonight and begin afresh tomorrow knowing that our Father cares for you: "Because of the LORD's great love we are not consumed, for his compassions never fail. They are knew every morning; great is your faithfulness." Lamentations 3. Great is thy faithfulness O God my Father.... what a beautiful song!

God Bless

Gerry & Margaret
Logan, Jasmine, Curtis

Anonymous said...

Wonderful news!!! Hope you and Brain get the rest that you need. Glad to hear that Tyson is doing okay. May God forever keep yoiu all in His care!

God bless!!

Garth and Alida
Sara, Noah, Julia, Nadia

Grant and Marg Kottelenberg said...

Just want to know that our thoughts and prayers were with you all day. We pray that God will bless Tyson with a speedy recovery and that He will grant you the strength, wisdom, patience, comfort, peace and trust you need to be able to cope with this very difficult time. God is holding you in the palm of His hand!!!!

Grant, Marg & family

Steve & Jo said...

Hi Mel
So crazy that I found your blog. I am friends with your cousin Sara L. Anyways, just wanted to let you know that I am praying for you and your family. My sister has a son with major heart problems. He is now almost 5, and I think he has had 4 or 5 open heart surgeries. The good news is that he looks great, but he will be having at least one or 2 more. Anyways, praying for all of you, we hope Tyson heals from this surgery without any major complications.
Steve & Jo A. (your freecycle friend from Caledon Village now moved to Brampton)