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 Three Post-Fontan




Tyson had another rough day. He (we) didn't sleep well last night at all. Tyson was unsettled from 12-4am...and then we had to be up at 8am for the echo at 9am. Right away he was pretty grumpy that he couldn't eat or drink, because it was a sedate echo. When we got to the echo lab, they were behind schedule. The nurse practitioner Jenny examined him in the echo lab, and she noticed that he was wheezing, so they gave him a ventolin mask before they were comfortable sedating him. He was then on an O2 mask during the echo and his sats were in the low 80s with O2. HIs sats should definitely be higher than low 80s on O2. So the NP ordered chest x-rays because he is also coughing a lot and his chest sounds rattly. (This coughing pretty much just started last night, as he sounded good and clear yet before leaving Ste-Down yesterday.) The chest x-rays came back ok, so they aren't too worried about pneumonia at this point. *PHEW* I was worried.
We are trying to get Tyson up and moving as much as we can, so that he can cough out whatever is in there. But it's very difficult to do this when there is so much going on in the day. Once the echo was done at 10:30, we had to let him sleep off the sedative for a while. Because he didn't sleep well last night, we let him sleep until 11:30am before waking him. He had some milk to drink and a cookie, then we were back to our room for a while. He had some lunch and then was too tired to do anything else so we let him sleep. Then the x-ray was ordered for 3:00pm. It is quite an ordeal to move him from bed to stroller to x-ray, back to stroller, etc. His chest tubes are still draining so we have to manouvre around the bulbs of fluid. And we were almost on our way back to his room when x-ray called us back saying they didn't get a good enough picture. So back to the drawing board, we had to do the x-ray process all over again. Tyson does not enjoy being moved around too much, because he is still in a fair amount of pain. Also, he got behind on the morphine today because they didn't want him on morpine while sedated. Then by the time he got back to his room after the echo he was tired and I didn't remember to ask the nurse to give it. So, by the time this whole ordeal with x-ray was over, Tyson was "done". Screaming fits of pain and rage, not co-operating, not a happy camper at all. He had some more morphine again once he woke up later in the afternoon, which was good because they were able to remove one of his chest tubes today and morphine is necessary for that process too. It's pretty painful too.
Watching hockey with his Daddy while I type up a blog update.
On days like today and yesterday, when Tyson is in pain and pretty much unbearable, I am so glad to have Brian here. There is just no possible way that I could get through a day of my son screaming in pain, being totally uncooperative and grumpy, and having to move him from one place to another to another, all by myself. It's great to have a wonderful family and communion of saints to care for our other children, and give us the financial means to give Brian time off to be with us. I just can't do this without him. Once Tyson is a bit back to normal, it will get easier. But for now, it's so draining on me. Not just the physical work nivolved, but the mental work too. remembering things and writing things down, and not leaving Tyson's side. Brian has been great at remembering how much Tyson has had to drink and when, how heavy his diapers are, etc. We have to keep track of all his inputs and outputs so that he doesn't retain too much fluid. He has gained almost a kilo since his surgery, because of all the fluid in his chest and just fluid retention is common after major surgery. The Lasix helps rid his body of some fluids, and drinking enough helps him pee enough. It's all so exhausting at times. We were thinking that once Tyson was up on 4D in his own room, that Brian would go back to work. But because he's moved up so soon, and there is still so much pain and angst, I am glad that Brian has been here. The loose plans are for Brian to get back into working again on Monday. We are really hoping that from now on, we can stay on top of the morphine because Tyson is clearly not able to live without it yet. Hopefully over Saturday and Sunday Tyson will start coming around like his old self again, and then I am ok for Brian to leave us. Maybe seeing his brothers and sister tomorrow will help cheer Tyson up :)
Removing one of the JP drains that was done draining. It takes a room full of people to help with the process. I couldn't be there to watch because I've seen this done before and I didn't enjoy watching it...
Tyson has been eating slowly again, for which we are so thankful. Once his appetite comes back, his strength will start to come back. He was still too weak this morning to stand on the weigh scale, even while holding onto both hand rails. Then today was so busy there wasn't another opportunity to try getting him standing up again until tonight after dinner. He wasn't quite ready then yet either. He did bear some weight on his legs but he is still in a fair amount of pain so it makes it more difficult. Even having the JP drains (chest tubes) contributes to what he can and can't do. They have to be secured onto his pants so they're not too heavy when walking around, but the clamps eventually start to rub against his skin and cause chaffing. *sigh* I know that the draining will eventually stop and I am 100% positive that once they come out, he will be SO much better. He'll be able to roll around in bed better, sit up more comfortably, and hopefully walk soon too. It's just so hard to describe how these JPs are affecting his recovery, so I took some pictures and I have posted them at the bottom of this post. For those who have weaker stomaches and would prefer not to look, then please don't look. But if you think you would like to see what I am talking about, have a scroll down the page and take a peek. I'm hoping I can get the pics far enough down that those who don't want to see don't get a glimpse :)
OK.....so I've tried to press Enter 100 times to get the pics at the very very bottom of the page, but it's not working, they are just coming up right after my blog entry....so if you don't want to see them, then don't look too closely:)
That's the update for today.
Thanks so much to everyone for your prayers. I have a few matters you can add to your prayer request list:
1) Please pray that Tyson will continue to recover well, and that his pain can be managed.
2) Please pray that Brian and I can continue to be a support to him and to each other.
3) Pray that Braden, Merrick, and Kenya do not get too anxious and that they too can trust in their Heavenly Father to provide all things.
4) Pray for other family members who are affected by Tyson's condition; grand-parents, cousins, aunts, uncles, friends.
Thanks!
Brian and Mel:)
The JP drains
Emptying the JPs with a big syringe
Three JPs clamped to Tyson's pants so they can stay somewhat out of the way.

9 comments:

Joanneke said...

Hi Brian and Mel and family,
Its so hard to read how much pain Tyson is in, and how difficult it is for you to handle. I can only imagine... We have to remember that its only Day Three, and he has made a lot of progress already. We continue to hold you before God's throne constantly. Its so comforting to know that He knows your every need, and He will not give you more than you can bear.

Anonymous said...

Brian and Melissa, we too pray for continued healing for Tyson, and for endurance for you both in these trying days! We wish you all much strength. Enjoy the game tomorrow, I think Jay's a little jealous about the tickets. Never mind, you guys deserve a night out - hopefully they perform well for you!
Jay & Linda & boys

Anonymous said...

Aw, the poor guy - he looks so sad in the pics, and understandably we hear your exhaustion setting in - it must be so hard to see your little guy so sad and in pain :-(
Praying for strength for you all,
Garth and Alida and family.

Anonymous said...

Aww, poor Ty and poor you guys. Watching your child in pain is never easy, thankfully you have God to rely on!
Thinking and praying for you all the time!
Keep up the great work all of you!
Lea and Derek

The Clinkscales Family said...

Thinking of you. I know you are exhausted. I'm happy to see Tyson is making progress. I hate to hear he is still in pain but I guess that is to be expected. Poor guy has been through so much in the last few days. Honestly I'm having a hard time looking at the pictures and reading everything without sobbing. I know Tyson is doing wonderful and I pray Cain will do just as well with his Fontan but the thought of seeing Cain like that again breaks my heart!! I'm SO NOT ready for him to have the Fontan. It will be nice to have it behind us but man oh man it makes me so nervous! I know you completely understand. Big, Big hugs! Catherine

Anonymous said...

Be sure that we don't forget about you! I can imagine the exhaustion you must be feeling and the stress over not being able to take away Tyson's discomfort and pain. You know that God is with you all the time and He will sustain you. We continue to keep you in our prayers.
love
Marg & Henry family

gerryandmargaret said...

Wow! what a tough day - how difficult it must be to see Tyson like this. May you be strengthened knowing that you are surrounded by the love of the Father and the prayers of so many!! Thinking of yous often. Hope you have a great day on Saturday!

gm

Anonymous said...

I hope you guys are having a wonderful day with Braden, Merrick and Kenni there! (and J & H!!) Hopefully that will lift Ty up a little too!
Thanks for sharing with photos too. It helps us understand what he (and you) is going through a little more clearly.
Keeping on praying for strength and patience and a timely recovery!
love
karen (jeff, joel, aaron, jonah, hanna, lydia too!!)

Anonymous said...

Praying you have a good family day today! May much patience be granted to you all. Lifting you all up in prayer. The Lord will sustain you! It's great to see the pictures, so we can see what is really going on.
Betty Bouwers