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!

Waiting for November 18th...

As you know, the big day has been set for November 18th. Here's a "quick" update, just so you all know how Tyson's been doing in the meantime :)

Tyson is doing great! He's 23 months old now and starting to really chatter. His vocabulary is expanding every single day, he is putting 2-3 words together, and he is constantly making us roll on the floor laughing at his antics. Last week he had another speech assessment done, and the ST was very impressed with his progress over the past 5 months. She says he is in the normal range with respect to the amount of words he uses, but the pronunciation still needs work. Another assessment will be done in 6 months and if he's still having difficulty expressing words properly, they might start a program with him. I'm honestly not that worried about it. He'll get there! WE sure understand him! Our oldest 3 kids are having a hoot with him too, of course they think everything is so funny all the time. Even when we're trying to discipline him. We're always laughing at the funny things he says and does, and the expressions on his face when things don't go his way. That's our Mr. T.


With my other kids at this age, if they were quiet it usually meant they were getting into trouble. When Tyson gets quiet and I'm wondering where he is, he is usually sitting in the corner of his room by his bookshelf looking at his picture books. He LOVES cuddling up with a good book, like his Mama :)


So far this fall, Tyson has been extremely healthy. Our whole family has been blessed with amazing health so far. Since the cold/flu season has hit again, we've enforced a strict hand-washing policy in the household again. The kids get so used to it that we don't even have to remind them anymore. We're also trying to keep Tyson away from public places, especially places where there are large groups of young children. So far he is good :) His "asthma" or whatever you want to call it has been acting up again since the weather has changed again, so he is back on his inhalers. Hey, he did pretty well, he'd been off them for the entire months of August and September. That's not bad. He is coughing a bit, and has a "ruggel" in his throat again, but his airways sound clear and he's not waking up in the night from it or anything. No runny nose or other signs of a cold though, but we're giving small doses of liquid silver 3X a day to prevent anything from hitting him. That's in addition to the multi-vitamins and pro-biotics. You can never be too careful with a kid like him. He's come this far already, we don't want him getting sick right before surgery.

So November 18th is the big day. Three weeks from today. Two weeks till pre-op. Not that I'm counting ;P

I am struggling with how much of my feelings and emotions I should share on this blog, since this is technically Tyson's blog not mine. But I can't help the raw fear at the thought of losing my son. This is pretty serious stuff. At this point, I am not as concerned about his HRHS (small right ventricle) or his other defects, but I am more concerned about the PVS (pulmonary vein stenosis.) Brian and I are both very much looking forward to the pre-op day, when we will have opportunity to talk to Tyson's surgeon about the severity of it all. I'm really hoping this Coles procedure works for him. The Coles (to fix the PVS) is definitely a bigger concern than the Fontan (3rd surgery to re-plumb his HRHS heart.) *sigh* Waiting can be so excruciating!

There have been so many times in the last 2 years that I wish we had a remote control for our lives. We could rewind to special times, pause at the great moments, go in slow-motion to savour the happy and exciting moments, and fast-forward through the difficult, painful times.

In some ways, I wish November 18th would never come. Why operate on a seemingly healthy little boy? Sometimes it's so hard to accept that his heart is so sick on the inside, especially because he looks so good on the outside.

In other ways, November 18th can't come soon enough. I'd love to have this all behind us now. Like right now. I want to push that fast-forward button...If only it were that simple!

I am so happy that at times like this, we can go to the Lord in prayer. We are never alone and we will forever be grateful that "our help comes from the LORD, the Maker of heaven and earth." (Psalm 121) While I wish we could just fast forward our lives at a painful time like this, we know that God is holding onto us and helping us grow closer to Him in times like this. He will pull us through it, as He always does!

This surgery will be different too, in the fact that Tyson is much older than the last time. He can talk and express hurts and pain. He won't sleep as much this time around because he's no longer a baby, but I'm secretly hoping they keep him heavily sedated for a while...to keep him calm.

As much as I am sad about what we have to endure in placing our son into the hands of the surgeons once again, I am even more worried about how Tyson will react and behave. Will he feel pain? Will he be able to express his pain? Will he be mad at us for allowing this to happen to him? Will he remember the pain? Will he be calm enough to lie there, resting soundly like he's supposed to, without pulling out all the wires and tubes? He's a very active little guy, how will he handle being in pain every time he moves? If he has a temper fit and decides he is not happy with where he is...well...those of you who know Tyson....you know that this would be a very stressful event for us to keep him under control. His temper has got him through 2 surgeries and many procedures in the past, I pray that his temper will help his recovery and not hinder it. (Ok, so I won't let his temper take full credit for his recovery....thank-you LORD! But the determination has helped:)

Well, I am blogged out for today. I will probably post another update after his pre-op date, or maybe the next day.

Once again, we covet your prayers :)
Mel:)
(Since Tyson will be spending his second birthday in the hospital, we got his 2 year pictures taken earlier in October and I've posted them below. Enjoy!)

























7 comments:

Sara said...

Have they told you to keep him away from dairy for the asthma...Not sure if or how it is related...may not be at all for him...But for the rest of us we stay away from it as much as possible and since it is not necessary really as we all used to think...My boys have never been giving much milk but we've had cheese & yogurts of course. No idea if that would help too.

Joanneke said...

Thanks so much for sharing your feelings with us, Mel. They are completely understandable! I couldn't imagine having to hand over Levi (or any of the others!) to surgeons, knowing that his life is on the line. But its so comforting and assuring to read that you know where your help lies- and God will provide you with what you need when you need it. Enjoy your little guy! I know what you mean about the antics of a 2 year old (or almost 2!). Please do keep us updated as to Tyson's health, and how things are going with you all.

Edie Mindell said...

I've read the story of your child, and I commend him for being a brave little guy that he is. Much more to you for also being brave to handle this situation. My prayers are with your son and your family as you near his operation day.:-)

The Wallis Family said...

I can completely relate with everything you're saying! And although Allie is still a year or more away from her fontan, I think about it and how it will feel--which is basically how your feeling now.
Thank you for sharing your feelings.
I am praying for your family and especially Tyson.

Blessings,

Venus

willowsprite said...
This comment has been removed by the author.
willowsprite said...

I know how you feel about wishing for a remote control! Trials are not fun. And the waiting, and waiting, and not knowing, and the questions...
Thankfully in our fear and stress we can turn to Him for comfort. And just as you say, we do grow closer to Him. What a major benefit!
I'm glad you can share how you feel here, so we can lift you up in prayer, knowing exactly how to pray for you. Please continue to do so!
Love,
Sherri

willowsprite said...

Whoops, somehow my comment got double posted. I couldn't see it for some reason, so I redid it. Sorry!