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 One Post-Glenn - Wednesday, May 13, 2009

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1: 2-4

Today Tyson had to take a big step backwards in his progress. (Two steps forward and one step back is what he seems to like to do!)

He had a really good night last night. He started taking breastmilk by bottle and guzzled it down quickly. He was clearly hungry! We had to start him off very slowly because after surgery there is always concern that the stomache will not tolerate the food. He guzzled 1 oz of breast milk in about one minute flat. I asked the nurse for one more ounce since it seemed like such a tease to him, but I wasn't allowed to give him any more. By 1 am he was tolerating 2 oz at a time. So that was good and he seemed to settle to sleep ok.
However, Tyson had a very, very rough day. He sure had a LOT of attention today by a lot of different medical professionals. He has had someone at his bedside all day long. Usually at least two nurses as well as either a fellow doctor, cardiologist, respiratory therapist or physiotherapist. He has really struggled to breathe all day and there is a fair amount of sub-costal in-drawing on the left side and a chest x-ray this morning revealed some fluid in his lungs. (It is common for this to happen after surgery, as it did the last time too. The fellow doctor was happy with how his morning x-ray looked compared to yesterday's and he is not concerned about this fluid being chylothorax. The drainage coming from his chest tubes is also red, not the milky-white substance that would indicate a chylothorax leak. So thankfully, it does not appear to be a chylothorax leak and he can remain on breastmilk.)
But because of Tyson's struggle to breathe all day, the low oxygen saturations (he's been in the 60's all day) and the in-drawing in his chest, they ordered another chest x-ray for this evening. It showed the beginnings of lung collapse on his right lung. They have tried everything they can today to get him to breathe easier. He was on oxygen with the nasal prongs this morning, then they had to put him on CPAP to help keep constant pressure in his lungs so he doesn't have to work so hard to breathe. Then they put it on Bi-PAP mode which gives him even more support than the CPAP mode. None of these things are working for him and he continues to put a lot of effort into breathing, so now they have decided to re-intubate him. :(
As much as this is a big step backwards in his recovery, the breathing tube will allow his lungs to re-inflate. This will also give his lungs a rest overnight and if he does really well and rests up, they may even see if he's ready for extubation again tomorrow. The goal is always to take the tube out as quickly as possible (and keep it out) because the longer it's in, the greater risk of infection and the greater risk that Tyson will rely on it for breathing. So they do not really want to re-intubate but there really is no choice left. They've done everything they can to help him. It's not a decision they make easily and they have debated it back and forth all day. Tyson is kind of on the fence: if he was a little bit better they would just leave him as is, and if he was a little bit worse, they would definitely intubate. Brian and I gave them the go-ahead to re-intubate since we feel he needs the rest and he will be much more comfortable this way. We don't love the fact that he is taking a step backwards, but we also do not enjoy seeing our son work so hard and being so upset every time someone comes near him. He has been fighting all day, and every small thing is annoying him right now so his body just needs a break for now.

Tyson is also back on Ng feeds for now since they don't want him to aspirate. Now that he is being re-intubated, they will not give him any more milk until at least 4 hours after intubation. Then they will proceed with Ng feeds again. But I am ok with that, since it is my milk they are giving him and not that gross portagen like last time.
Tyson has also been given some chloralhydrate and ativan to keep him sedated, since he is very unhappy with everything going on. He is also still on morphine and they are giving him good doses of Tylenol too. He wants to pull at the wires and tubes coming out of his body and he has had a pretty cranky day. This could also be due to the changes in the direction of his blood flow to the lungs. Before his surgery, blood was flowing through the BT shunt to get to the lungs. Now that the shunt is removed, the superior vena cava is what carries the blood to the pulmonary artery, which then brings the blood to the lungs. Sometimes babies have to get used to the changes in blood flow and can experience head aches for a while after the surgery until they get used to it.
So that is the update for today. I will try to do my updates every evening between 7pm-8pm, since that is when the nurses change shifts and we cannot be in the room anyways. Brian is staying with me for a while yet this evening and then he will go back home to start work again tomorrow. There isn't much he can do here for Tyson; I am here for Tyson and Brian is here for me. But I will be ok for a couple of days on my own, since I know I am not really on my own anyway! We are reminded always that God is in control and that not a hair can fall from our heads without His Fatherly hand. Tyson, too, is in God's loving and powerful hands and we lean on Him for strength. Please keep praying!
Brian and Mel:)

7 comments:

Henry and Jules said...

Hey there Brian and Mel,
We pray that God will continue to bless you all with strength, patience and peace as you watch your little Tyson struggle to get well again. It isn't easy to watch your little one in pain and being uncomfortable...but we know that God is holding Tyson in His hands each and every minute of the day. Hang in there Mom and Dad...Many of us our praying for you!
Henry and Julia

Mel said...

Sad to hear he had to be intubated, but it sounds like it is for the best. We pray that the Lord will give you the strength to make the right decisions and to deal with seeing your little one struggle. Hopefully all will go well and Tyson can be extubated again tomorrow. Melissa, I know it is expensive but if you need to talk to someone you can always give me a call...or we can chat through Facebook. Love you and keeping you both and Tyson constantly in our prayers. Jay, Mel, Jaidynn and Mikayla

Anonymous said...

Continuing to uphold Tyson and you as his parents in our prayers ....all he best Brian, in getting back to work, and you too Mel - here's a big hug from me...
jkjajh vs

Joanneke said...

The text you picked to head off your blog is very fitting. As hard as it may be to experience trials, know that God is in control and He will provide you with strength and peace for each new day. We continue to keep you all in our prayers!
Lots of love,
Joanneke

Aunt Rita said...

Thankyou for the post Melissa! ALWAYS praying for Tyson. Daily praying for you and Brian too, for strength, comfort and patience.
Like you said, two forward and one back...it's still good. One day at a time, like in my favorite song when I went through troubles..

"Show me the stairway I have to climb,
Lord for my sake,Teach me to take
One day at a time.
One day at a time, sweet Jesus,
That's all I'm asking of You.
Give me the strength to do everything that I have to do.
Yesterday's gone sweet Jesus,
And tomorrow may never be mine,
Lord help me today,
Show me the way,
One day at a time..."

You can listen to it at www.lyrics.
or..
paste> http://www.lyrics.com/index.php/artists/lyric/marilyn-sellars-p-521567-lyrics-one-day-at-a-time-t-9080915

Sung by Marilyn Sellars
Just as I remember when I was a child. It was one of Dad's Favorites.

Love, Aunt Rita

Richard said...

Just a little note wishing you all the best. our thoughts and prayers are with. may God continue to give you strenght at this time.
Remember your needs are more important than work right now so dont feel the pressure to be here if you are needed with the family.
Hi and best wishes from Donna too.

Anonymous said...

Hi Brian and Mel:
Holding you all in our prayers and wishing you patience and strength!
May tyson's lungs and blood flow inprove so he can take a step forward again.
Betty Bouwers