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 Ten Post-Norwood - Sunday, December 14, 2008


"I will say
of the LORD,
"He is my refuge and my fortress,
my God, in whom I trust."
Psalm 91:2


HAPPY 35th ANNIVERSARY MOM AND DAD!

Yesterday we enjoyed a trip back to Orangeville to celebrate my parents' 35th wedding anniversary (which is officially today.) We had an enjoyable time and it was great to get together with the whole family again!
Although it was difficult to leave Tyson in the morning, it was just as difficult to leave Orangeville again at night. Our hearts are being torn in many directions. When we saw Tyson in the morning, he had just been suctioned, and he was very upset and working extremely hard to breathe. (As you know, he was extubated on Friday evening and has been working very hard to breathe ever since.) They told us in the morning that if he continued to work that hard, they might have to put him on CPAP. CPAP still allows Tyson to do all the breathing on his own but it gives him an extra "whoof" during each breath. It's kind of like sticking your head outside a bus while it's moving....!
Anyway, it was difficult to leave Tyson in the morning, especially considering how hard his chest was caving in and out as he took each breath. But as we neared Orangeville my feelings were very "up and down" as we got closer to my other children but farther and farther away from Tyson. Then as we said good-bye to the other three children at bedtime Saturday night, I cried again.....the emotions are so hard! I feel like I am riding a roller coaster all the time.....it was so hard to say good-bye to my other children but my heart still tugs at Tyson and being there for him too. I feel like I need to be two places at once, and that is why we are SO THANKFUL for my parents and the dedication they have to our other children during this difficult time. It is also good that Brian can be there for them during the week and I can focus my attention on being with Tyson. As much as I miss my other three, I know that they are in good hands and they all seem to be coping very well.
When we visited Tyson again on Saturday night, he was on CPAP because there had suffered a slight lung collapse in his left lung. (not even the lung we were concerned about in the first place!) He was breathing peacefully on CPAP and as long as he does well and his saturations stay constant, he will not likely need to be re-intubated. The nurse says that many children need to be on CPAP after being extubated and even 35% of children need to be re-intubated.

This morning Tyson was still breathing very comfortably. There doesn't seem to be talk about re-intubation (*phew*) because he is doing so well on CPAP (according to the nurse he is 100% better than last night.) (And yes, I got to hold him! That felt sooooo good!) This afternoon after church we saw him again and the nurse mentioned that he had a rough afternoon because he is very annoyed with the CPAP in his nose. The plan is to take off the CPAP sometime during the night and put him back in the head box to see if calms down. They also gave him a small dose of a sedative to calm him down. (Where did he get his temper from?)
Good news about the x-rays of his chest! The x-rays from Saturday morning showed a slight collapse in the upper probe of his left lung....but the x-rays from Sunday morning show an improvement in the amount of fluid in the lungs, and the left lung is re-inflating as a result of the CPAP. So it looks like the CPAP is doing its job and his lung should be repaired in no time. As long as Tyson can expel the extra fluids, he will continue to move forward. We pray that he can learn to breathe deeply so he can be off CPAP soon, and that he will continue to cough and expel the secretions in his chest and lungs.
As far as the concern about his right lung, it looks like those fluids have "magically" disappeared! His right lung now looks healthier than his left, and although there are still small amounts of fluid on either side, he seems to be doing well and the fluids are definitely decreasing. Tyson is also receiving regular physical therapy where they train the lung to loosen the fluids so he can cough more. It involves tapping, shaking and massaging the lungs to loosen things up. From the looks of Sunday morning's x-ray, these things appear to be improving the amount of fluid building up. Reasons to praise the Lord for good progress!


Tyson has also been taken off of morphine by IV but they have been giving him small amounts of morphine (or a form of morphine) directly into his NG tube (feeding tube - NG tube is nasogastric tube.) The blood pressure medication he had on IV has also been discontinued and is being given by NG tube too (called captopril). These are all steps to making it more possible for him to go to a Step Down room. The less IVs he has, the better.
We will keep posting.
Brian, Mel and Tyson
















5 comments:

Melanie said...

So you look SLIGHTLY happy to be holding your baby again!! YAY! I am so happy for you! It was excellent to see you again yesterday!! We thank the Lord that Tyson seems to be doing so well and is still a fiesty baby boy--hopefully he gears his spunk toward getting better so he can come home soon!

Miss you lots!
Jay, Mel, Jaidynn and Tyson's little buddy

(P.S. What happened to the picture of Brian, Jay and the girls that you were going to put up?!? LOL)

Garth and Alida said...

Great to see Tyson in your arms! It was awesome to spend good quality "family time" with you guys yesterday. Looking forward to seeing Tyson again sometime soon too!
Lots of love,
Garth and Alida

Eric and Jaclyn said...

wow, mel....so much going on for such a little guy, eh? i am overwhelmed at all you are going through....and continue to pray for you to recieve the strength and comfort you need. i can't imagine how your heart must be aching for all your children. i know how hard it is on you to be away from them.
that is so great to hear that you got to hold tyson again!!!!!
and thank you for doing this blog :) i love to "check in" on you guys.
still praying, jaclyn

Anonymous said...

Hey there Brian and Mel,
Just thought we'd let you guys know that your family is in our prayers.
Love the Kim & Anthony & girls

Grant and Marg said...

Hi Brian & Mel,

We are so glad to hear that Tyson is making good progress, despite the small setbacks. We are so happy for you that you finally get to hold him again! We pray that God will continue to bless Tyson with healing and that He will also bless you both with the peace of God amidst all the emotional turmoil that you are experiencing. Can't wait to see you again!

With lots of love,

Grant & Marg & family ... esp. Lindsay!

PS ... Erin and Jaron got engaged on Friday and are planning for a summer wedding. I am experiencing some emotional turmoil myself ... lol.