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!

Thursday, November 18, 2010

"In his heart a man plans his course,
but the Lord determines his steps."
Proverbs 16:9

Tyson's surgery was cancelled for today :( And we didn't find out until the very, very last moment :(
There was an emergency in the Cardiac Critical Care Unit and another little girl was very, very sick and she needed Dr. Van Arsdell more than Tyson did.
With surgery scheduled for 12pm, the plan was to have Tyson scrubbed up and sedated at about 11am, and from there go to OR to be anesthetized. We had all morning to walk around the hospital, Tyson played in the 4D playroom for hours, where he had a blast. He was in a great mood, despite the fact that he had not eaten anything since dinner last night. At about 10am he started to get a little grumpy but was easily distracted. At about 11am he was starting to get very grumpy and pushed to the limits, so we notified the front desk that we'd be taking a walk and to have nurse Suzie call our cell when it was time. Suzie called our cell about 5 minutes later asking us to head back to Tyson's room. During that walk to the room, Brian and I were totally ready. Mind, body and soul. Walking hand-in-hand, praying for strength, shedding tears, thinking, "This is it. Here we go." Only to be told that there had been an emergency and Tyson had been bumped. Very heart-wrenching, like being punched in the stomach. Honestly, I have never felt such disappointment in my entire life. It was a very difficult moment for us.
At the same time, if the situation had been reversed, and it was Tyson in critical condition needing emergency surgery, we would want Dr V too. If we found out he couldn't do Ty's surgery because he was busy operating on a boy who was healthy, we would be pretty upset. So we have to be considerate of the situation and understand that this little girl needed Dr V much more than Tyson this time.
The surgical coordinator is hoping to have Tyson in for this coming Tuesday, but nothing has been confirmed. We will keep you posted.
Please keep praying. So much work and preparation goes into a day like this, especially the mental and emotional preparation. Please pray that God will prepare us again, when His timing is right for Tyson.

The roller coaster has been huge. Ups and downs. High mountain peaks and low, deep valleys. First, preparing for a surgery 6 weeks in advance is hard to do. It's almost easier to have short notice, you have little time to fret and worry. Then, we received the call that they had an opening for October 5th, which we couldn't accept because of a family important wedding. Then this past Tuesday (two days ago) the surgical coordinator called to say that Dr V had a very long, difficult surgery planned for Thursday so there might not be time for Tyson on Thursday. Would Tyson be ready tomorrow morning? (Wednesday) That was a very anxious day too, knowing we could have to give up our "Family Day" we had planned with the kids for Wednesday, and having very little time to finish all the last-minute details. By lunch time that same day, we received word that Dr V felt he could handle both the long surgery and Tyson's surgery on the same day after all, meaning Tyson would still be in on Thursday but he would be second-case. Although he wouldn't be in till later in the afternoon, we could handle that. It would mean Tyson would have to fast longer and he could get grumpy but oh well, at least it was still happening on Thursday and we could enjoy our family day on Wednesday!

Then this morning upon arrival at 6 am, we found out that Dr V was at home sleeping because he'd had a difficult surgery last night, and he would be doing Tyson's surgery at 12 pm. So Tyson would have been his first case, and his only case for the day. So we were very excited to have a well-rested, well-caffeinated surgeon doing Tyson's surgery, and we were relieved that Dr V could concentrate on just Tyson today. But for whatever reason, God had other plans. We hope and pray things go well with this other little girl who needed emergency surgery. Prayers to her and her family.
On the plus side, it is Tyson's second birthday this Sunday and we now get to celebrate it with him at home! Every cloud has a silver lining :)


Until next time,
Brian and Mel:)

1 comment:

Sara said...

I thought of you all day. Hope you get back there before December and that you can have a lovely Christmas together. Take lots of photos for Tyson's birthday. Hope they let you know soon and that it is not on Tuesday. Wednesday is good...that way our Bible Study group can pray for you all together again on Tuesday night.