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!)

























Sunday, October 3, 2010

"Wait for the LORD;
Be strong and take heart
and wait for the LORD."
Psalm 27: 14
Sometimes life requires us to make difficult decisions, and we just have to trust God and wait on Him. When we trust Him, pray to Him, and ask for His will to be done, we can feel peace in the decisions we make.
On Thursday Sick Kids called us with a surgical opening for this coming Tuesday, October 5th. As much as we really want to have Tyson have his surgery while he is still healthy, we had to make a difficult choice and turn it down this time...and continue to wait for the scheduled date of November 18th.
With Rob and Francine's wedding coming up this Friday, it just wouldn't work for us. I just don't feel that I would be emotionally stable enough to attend the wedding with Tyson back at Sick Kids in Intensive Care. And since I am a bridesmaid, and Kenya is the flowergirl, we definintely want to enjoy the day :)
Fortunately, the surgical co-ordinator did say that she would most likely be able to call again and fit us in sooner than Nov. 18th. (No promises...but we are hoping!!) She is having a difficult time filling Dr. VanArsdell's time slots, since many people are having to cancel their surgeries due to colds/flus, or they haven't fulfilled all their pre-op pre-requisites. (like dental appointments - to make sure there are no absesses or infections that would act up post-op, etc. Tyson has seen the dentist already and he's good to go!)
So far this fall, Tyson has been very healthy. That is why we are anxious to get this party started and have his surgery while he is so strong. We are praying that he can still be fit in earlier than Nov. 18th, but we are at peace that if another opportunity does not come up, we've still made the right decision. Besides, Brian also strongly feels that he is not quite ready for Tyson to have this surgery this week yet. We would love to have a nice weekend together at the wedding with the family (except Tyson, who will be spending quality time with my parents) and have a nice Thanksgiving weekend together. Once we have a nice weekend together, they can bring on any date, we'll be ready! In our heads we've always thought "any time after the wedding..."
So now, we continue to wait until the LORD tells us it's time. If that is November 18th, so be it :)
Many people have been mentioning that they are keeping us in their prayers and for this we are so grateful. "The prayer of a righteous man is powerful and effective." James 5:16
If you wonder what specifically you can pray for, we have a list of requests that we'd like you to bring before God:
1) Please pray for Tyson's continued health in the next number of weeks while we await his surgery, and the health of our household. So far we all have been cold/flu free!!
2) Please pray that God will grant peace and patience to me and Brian, as we again prepare to place our son into the hands of the doctors. Also pray that God will prepare Braden, Merrick, and Kenya for whatever He has in store for our family. Each surgery gets tougher each time around, since Tyson continues to develop his own special personality, he can communicate with us more and more, he tells us "I lah you," he makes us laugh all the time (especially the boys), and we just love him more and more with each passing moment. I'm sure all parents can relate to the increasing attachment you feel to your children with each passing day.
3) Please pray that Tyson's pulmonary veins will start to grow on their own. Right now his heart is growing but these veins are not. The Cole's procedure they will do at the same time as the Fontan, will attempt to "fix" the problem, but if the veins don't begin to grow on their own, Tyson may need repeated procedures, or there's the possibility that he may not live a very long life. (This is so hard to believe, considering Tyson looks SO good today! We'll ask for more details about the pvs with his surgeon/cardiologist at pre-op.) We would love to have Tyson stay with us for a very long time!! So please pray that his veins will continue to grow as the heart grows.
Thanks for checking in, and thank-you again for your prayers!
Mel:)