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 15 Post-Norwood - Friday, December 19, 2008

"I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip
he who watches over you will not slumber;
indeed, he who watches over Israel

will neither slumber nor sleep.
The LORD watches over you,

the LORD is your shade at your right hand;
the sun will not harm you by day,

nor the moon by night.
The LORD will keep you from all harm

he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore."
Psalm 121

Yesterday was a bit of a slower day as far as Tyson's progress. He had spent a lot of time awake on Wednesday so he was very sleepy on Thursday. As a result, he didn't feed well and he ended up with more food in the Ng tube than taken orally. Two of the nurses have mentioned to me that Tyson's feeding is basically what is holding us here. Once he learns to eat well and we are confident that he is gaining as expected, we can go home. We have been praying hard that Tyson learns to eat well, and I must admit I am a little surprised at his slow learning when it comes to eating....of course I keep comparing him to my other three babies who all seemed to be good eaters right from the start. I have to remember that everything requires more energy for Tyson and that he is going to be a bit of a slower eater. (Slower than Merrick? Oh oh!)

Overall though, he appears to be a very happy baby, very content between feeds and falls asleep easily on his own. He spends a fair amount of time awake after each feeding, and goes right back to sleep after his nighttime feedings. He really only cries when he's hungry, which isn't very often since he gets fed every 3 hours right now and I think we wake him up before he has a chance to realize he is hungry. At doctor's rounds this morning I asked if we could go to more of a "demand feed" routine during the day and a stricter schedule at nights, since we seem to be waking him before he even realizes he is hungry and I think that is why he isn't too interested in the bottle. They have supported my request and we are "allowed" to give him more time to wake on his own during the day, as long as it isn't too much more than 3 1/2 - 4 hours between feeds. Especially since his whole feeding regime takes 45-60 minutes, is he really ready to eat again 2 hours later?

He also seems to throw up a fair bit, not just average baby spitting up. Cardiac babies are more susceptible to reflux, so I try to feed him more upright instead of laying down, and I lay him on his right side after feeding so that he can digest his food better. I spoke about that this morning too with the doctors on rounds and they want to put him on a reflux medication to see if this helps, and if he can show himself to feed well in the next few days, they may think about pulling his Ng tube to challenge him. Sometimes the Ng tube causes reflux so this may aggravate the issue. They are not increasing his portagen volume per feed, (because sometimes increasing the volume just increases the reflux problems.) However, they can increase his caloric intake by changing the "formula" of portagen. He still has to take in a certain amount of fluid per day so as long as he takes in enough fluids, we can stay on a "demand feed" routine during the day.
I probably won't be updating the blog every day anymore, it will depend on what progress there is to report. I didn't get to update the blog yesterday at all because it was a pretty busy day. In the morning Melanie and Jaidynn, Tanya and Kate, and my daughter Kenya came for a visit. Kenya is such a goof, she finally got to see her mommy and she spent the whole time being very sucky and whiny. She is only two afterall, and this is taking a toll on her too. Then Leo and Joni came later in the afternoon and Joni got to help the nurse changing the plugs on Tyson's PICC line. This is a sterile procedure so Joni got all decked out in hospital gown and all. Thanks Aunt Jones! Later in the evening my parents came and were tickled pink to get to hold their grandson.
Depending on how the weather goes, Brian and the other three kids are coming down to spend the weekend here with us. Tyson's case social worker arranged to get a complimentary room at the Delta Hotel right across the road from Sick Kids for Friday, Saturday and Sunday night so that the family can be together for the weekend. The boys are excited to finally get to see their little brother again and I am looking forward to us being together again. The hotel has a pool and there are a number of things for kids to do here at the hospital so it should be pretty fun. Brian is spending the nights at the hotel with all three kids (brave guy!) and I am spending the nights here with Tyson. We will be attending Toronto church on Sunday to celebrate Lord's Supper there.

So that's the update for today! Hopefully the demand feed routine will work out better for Tyson and he will show more interest in the bottle. Although this issue seems small in comparison to what he has already been through, we ask that you keep this issue in your prayers too. The sooner he learns to eat well, the sooner we can go home! The doctors talk about a discharge date of "sometime next week." I hope Tyson can eat well and we can go home without an Ng tube. This will be one less thing for me to worry about, especially with three other little ones at home.

Thank you all so much for your prayers and support. Brian and I can really feel that we are being carried through this ordeal in God's Almighty hand, and the prayers of righteous men ARE powerful and effective! Please continue to remember the needs of our family in your prayers.

Take care,
Mel:)

6 comments:

Eric and Jaclyn said...

hello,
that is good to hear that you can go on a demand feed scheduele...hopefully that will work well. (it makes sense to me! lol)
hopefully the 'guys' and kenya can make it up today...it's pretty nasty over here.
have a great sunday in toronto....
jac

Melanie said...

Yah...and guess who was the only little girl who DIDN'T fall asleep on the way home yesterday...LOL. I hope Tyson's feedings go well in the next little while and that you get to come home soon! In our prayers, as alway! Jay, Mel, Jaidynn and Tyson's little buddy

Joanneke said...

Hi Brian, Mel and kids,
I hope you have a great weekend together. After such a long time apart, it will be so nice to be together again. I hope the feedings will improve so you can go home soon!
Joanneke

the Kampen family said...

We are continually lifting you all before the Lord and praying for Tyson's recovery. Enjoy your weekend as a family - blessings and love to you all!
Ed and Gwen,
Justin, Jessica, Adam, Laura

Anonymous said...

hi Brian and Mel and kiddos
God has sure been with the little guy! It's so good to read that he's doing better and better each time I read a new post.
Praying for all of you!
Rob and Jen

Tanya said...

Must be having a good weekend ... too busy to post anything!! Can't wait to see you back in Shelburne soon. Missing you and continually praying for you!
Tanya, Scott & Kate