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!

August 25, 2010


"The LORD is my light and my salvation - whom shall I fear?" Psalm 27:1

I've heard some rumours that some of you don't enjoy how long my blog updates are. Well, Tyson's blog is my opportunity to report details that I would otherwise forget. With everything that has happened since Tyson was born, my brain has turned to mush and my memory has been quite unreliable. There have been SO many times I've looked back on this blog to find details about Tyson's previous surgeries and appointments that I would have otherwise confused or forgotten.
So, if you are one of those who thinks my blog updates are too long, here is the short version for your convenience: Tyson's cardiologists and surgeons are confident that the pulmonary veins and the Fontan procedure can be completed in one open-heart surgery. We should be hearing from the surgical co-ordinator in the next 2 weeks with a surgery date. Most likely October or November.
Thanks for checking in!
Good-bye.


Wednesday, August 25, 2010
Mom and I took Tyson down to Sick Kids again today for his echocardiogram, ECG, and appointment with his cardiologist, Dr. McCrindle. The last time he had an echo Tyson did not want to fall asleep and it was a pretty miserable experience. This morning, within 5 minutes of receiving the chloral hydrate, his head became heavy and he was getting grumpy. When the radiologist who performed the echo started setting up her echo equipment immediately after he received the sleep drug, I snickered to myself and thought, "Come back in an hour, lady." But Tyson actually didn't fight it for too long and he was sleeping in less than 20 minutes.
Once he woke up, however, he turned into a wild boar. Since the chloral hydrate puts one in a deep sleep, you wake up feeling groggy, almost drunk. Well drunk he was! And not a happy drunk either, but an angry drunk! He hollered and screamed off and on for over 3 hours. After the echo, and once he was eating and drinking again, we still had to see Dr. McCrindle so we waited around for him. The cardiologist fellow who came in to examine Tyson couldn't even get close because he was so angry. I am sure he has a sore throat tonight because, if you know Tyson at all, he doesn't really cry, he screams. Dr. Mc Crindle called him a "wild boar." That is exactly what he sounded like. Poor guy was so disoriented, he wasn't able to go down and walk around because he could barely hold his head up straight. He was tired and hungry and whoozy all at the same time. I don't remember it being that bad last time in February, but the nurse was thinking that maybe last time he may have spit some of the chloral hydrate out, which could be why he took so long to fall asleep. Maybe this time he got the full dose and his head wouldn't quit spinning. A few times during lunch he did point to his head and say "ow" so he was probably spinning like mad. Poor guy.
We figured that as soon as he got in the van he would be out like a light, but no such luck. Screaming all the way from the hospital to the 410. We finally exited and gave him more to eat, thinking he would go to sleep with a full belly. No such luck. Grumpy and miserable :(
He did eventually fall asleep but only for an hour.
So, what did Dr. McCrindle say? Here follows the questions I asked and the answers we've received so far:
Are we planning to proceed with the Fontan procedure in the Fall?
After discussing the finding of his heart catheterization done on August 5, the team of cardiologists presented Tyson's case to the surgeons who decide if he is a ready candidate for the Fontan procedure. The surgeons said "yes" and the surgical co-ordinator is expected to call us sometime in the next 2 weeks. I really pressed Dr. McCrindle to have the surgery as early in the Fall as possible, since through the winter Tyson catches every bug that goes around and his surgery would keep getting cancelled. Dr. McCrindle hinted that he has a feeling it will be before the cold and flu season, but he said he can't promise September. Fine with us, we prefer mid October...if we had a choice!
Are the cardiologists and surgeons confident that the small pulmonary veins can be fixed during the same open-heart procedure as the Fontan, or is there a chance they may open him up to perform the Fontan and decide they cannot go ahead?
Well, we can never be 100% certain of the outcome until the surgeons see things with their own eyes. But the MRI that Tyson had done gave a very good picture of these veins and the heart cath gave further perspective on it, so, yes, although the small veins are definitely a bump in the road, they are a minor bump and it can be dealt with at the same time as the Fontan. It will make the Fontan surgery more complicated for Dr. VanArsdale to perform, and recovery time could be longer than the typical Fontan recovery, but he is confident we can do it all at the same time.
Has Dr. VanArsdale seen small pulmonary veins before and is he sure it can be fixed?
Yes, Dr. VanArsdale is a superb surgeon and all the complex cases go to him. He is one of the best surgeons here.
What are they going to do to fix the veins? Balloon angioplasty?
No, we have found in the past that ballooning is not an effective way to go and it requires more stitching and patching that eventually breaks down. The procedure we plan to do is called the Cole's procedure, developed here in this hospital about 10 years ago. This is the route we are going to go. It requires less stitching and therefore less scar tissue, so it's better for the heart long-term.
Can you tell me in plain English what is done during the Cole's procedure?
No. It's pretty complicated and I don't perform it myself so I wouldn't be the one to ask. This is something you can ask Dr. VanArsdale yourself during pre-op.
If I googled the Cole's procedure, would I find more information on it?
Probably not. It was a procedure developed here in this hospital.
(I googled Dr. Coles sutureless Pulmonary Vein Stenosis repair - I found some information. I don't really like what I read, but we put our trust in God, not statistics :)
Will this Cole's procedure fix the pulmonary vein problem permanently or could this problem reoccur?
We can't give predictions of how his heart will grow. If these veins continue to grow along with the rest of his heart as his body grows, everything should be fine. But we won't know that until farther down the road. We'll cross that bridge if/when we get there.
What is the average recovery time for a child receiving the Fontan?
Typically, they are in Intensive Care for 2-4 days and the 4th floor for anywhere between 3-10 days. Typically. So about 10 days to 2 weeks. Typically. But I can't guarantee anything.
Will they need to make a fenestration during the Fontan procedure? (a fenestration is a surgical hole in the heart to relieve pressures in the heart, is often closed by heart catheterization 6-12 months post-Fontan)
It all depends on the pressures in his heart. During Tyson's post-Glen heart cath in May 2009, his pressures were quite high. Since then, the pressures are good again. So if Dr. VanArsdael feels that the fenestration is needed to relieve some of the pressures, he will create a fenestration. Which will be closed in the cath lab sometime later.
Will Tyson need any new medications after his Fontan?
Most often we will put them on a blood thinner until the heart gets used to its new blood flow. An aspirin a day, or sometimes Coumadin. Some adults who've had the Fontan are still on Coumadin and will be for the rest of their lives. But no more Enoxaparin injections, don't worry.
Ok, I think that is all I can think of right now. I may remember more details later on. Unfortunately, because Tyson was being such a "wild boar," my Mom couldn't help me absorb all the information today, because she was walking around with him in the hallways ( we couldn't hear Dr. McCrindle over top of Tyson's screaming!) So I am only going by my squishy memory, not my Mom's.
Take care and keep checking in on us for a tentative surgery date!
Remembering the words of Romans 8:28, "And we know that in all things, God works for the good of those who love Him, who have been called according to His purpose."
Praise God for His everlasting words of hope and comfort!
I feel so blessed to call Him "My Father."
Mel:)









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Echo, ECG, and Cardiologist Appt: Wednesday, August 25, 2010

"When I said, 'My foot is slipping,' your love, O LORD, supported me. When anxiety was great within me, your consolation brought joy to my soul." Psalm 94: 18, 19

Ok, so this isn't really an update on any changes in Tyson's condition but I am just feeling an increasing urge to blog today because I am feeling the anxiety slipping in again. Tyson has a echocardiogram, ECG, and appointment with his cardiologist this Wednesday. I am really hoping that by then we will have some sort of idea when they plan on doing this surgery and whether or not they are planning one surgery or two. Argh, I just want to know already! It would be so nice to be able to close this chapter of Tyson's life and turn the pages to a new chapter :)

Reflecting on the words from a daily devotional I subscribe to, which focused on Psalm 94, I am overwhelmed at God's presence near me and within me. The comfort He brings when I am under siege, the strength He offers when I am weak, the courage He gives when I am under attack, and the hope He instills when all seems hopeless - - these gifts of His presence are precious to me. Without His presence I would not know where to go or why I am here.

If you are still reading this, you by now know that I need your prayers. Prayers that God will grant us His peace, and that He will grant us all the patience we need as we await answers. Tyson, of course, needs your prayers too. Pray that God will continue His goodness and grace towards our little guy, that he can continue to travel on the road that he is on, and that he can continue to grow and develop the way he has been :) God is so good!

Cath Day August 5, 2010 - update # 2

I am going to try to make this short and sweet because I am at my Mom's and I really want to get home to see my other kids. (5:44 pm)
Tyson's heart cath went on without any major complications and he was discharged from the hospital by 3:45 pm. Right in time for rush hour traffic :) The MRI perfromed before the cath procedure gave a very good picture of the heart, and it revealed that they could indeed insert the cath through a vein, not an artery. Which is why we were able to go home after 4 hours observation, not 6 hours. YAY!
The collateral vessel that is growing did not need to be coiled at this time since it has grown down towards the bottom of the heart, which is where they will be performing surgery in a few months. So no need to repair at this time. The leaky mitral valve which was patched closed during the Glen has stayed the same, no further leaking.
However, the cardiologist said they found something that surprised them today. (Ech, I hate hearing that!) Tyson's pulmonary veins (which were discovered to be small during his Glen surgery in May 2009) are actually smaller now than they were before. This means they cannot complete the Fontan surgery until these veins are fixed. The cardiologist today is hopeful that it can be fixed at the same time as the Fontan, (immediately before the Fontan procedure, but during the same open-heart operation.) BUT... I remember Ty's surgeon saying last May that there was a possibility that they would have to do an additional surgery before the Fontan to fix this problem. Right now we know nothing more than that. The info from today's MRI and cath will be sent to Ty's head cardiologist, who will discuss the findings with the surgical team, and from there they will come up with a date for surgery as well as a plan for if the pulmonary veins problem and the Fontan completion can be solved in one surgery or two. Either way, the small veins most likely will complicate the Fontan recovery.
Despite this possible setback, I am reminded of the lyrics to one of Robin Mark's songs:
"All is well with my soul,
He is God, in control
I know not all His plans
But I know, I'm in his hands."
We are comforted that even though we don't know what tomorrow brings, we know Who holds tomorrow and that He is always in control!
Mel:)

Cath Day August 5, 2010 - Update # 1

Yesterday at pre-op we were informed that Tyson will also be having an MRI done while he is under anesthetic for his heart catheterization procedure. Brian and I signed the consent form for this MRI a few months ago and mailed it away, but hadn't heard any confirmation about it until yesterday. (In the hospital world there are always unexpected surprises and you just have to brace yourself and rollwith the punches.) Now is as good a time as any to have the MRI since he needs to be intubated and under anesthetic for the MRI. It is an hour procedure, and the heart cath will take at least an hour as well. We said 'good-bye' to a very frantic and crying little boy at 8 am this morning and were told to expect at least 3 hours of waiting. Tyson sooooo knew something was up when they put him in the gown....and the anesthetist had to peel him from my trembling arms. That moment will NEVER get easier.
Also, we were told yesterday that during Tyson's last cath in May 2009, they did find some small collateral vessels but were too small to do anything about it. If they find today that these vessels are growing and are causing his blood to flow in places where it should not go, they will coil them off today. If the collaterals are taken care of today, it will make the Fontan surgery easier to perform. This is a risky procedure...anything can happen to these coils as they can slip from the catheter during embolization and can fly off into the body somewhere, or into the brain causing blood clots, stroke, or even death. Eeech, I hate thinking about those possiblities and am thankful that they tell me that these events are rare. Praying for steady hands and positive results.
Also, the catheter is entering Tyson's heart through an artery in the groin (not a vein as previously thought) as well as through a vein in the neck. This means a 6 hour recovery time instead of 4 hours like last time....because entering an artery can cause greater chance of bleeding. The reason they are entering an artery is because Tyson is missing his tricuspid valve between the right atrium and right ventricle. So they have to either enter a vein and take the loooong way around the heart, or enter an artery and arrive there more directly.
So now we wait.... and wait.... and wait...but in my head I am singing the words of Psalm 121.
Psalm 121
1 I lift up my eyes to the hills— where does my help come from?
2 My help comes from the LORD, the Maker of heaven and earth.
3 He will not let your foot slip— he who watches over you will not slumber;
4 indeed, he who watches over Israel will neither slumber nor sleep.
5 The LORD watches over you— the LORD is your shade at your right hand;
6 the sun will not harm you by day, nor the moon by night.
7 The LORD will keep you from all harm— he will watch over your life;
8 the LORD will watch over your coming and going both now and forevermore.

August 5th Heart Cath

Tyson is scheduled for his heart catheterization on Thursday, August 5th. We will be going down to Sick Kids on Wednesday for his pre-op tests: chest x-ray, blood work, ecg, signing the consent form, etc. His heart cath is scheduled for 8 am on Thursday.

To remind you all, a heart catheterization can be both investigational and interventional. People who need a type of heart surgery like having stents put in, or need balloon angioplasty, have it done through a heart catheterization. Tyson's heart cath is investigational, in preparation for his Fontan surgery this year. If however, they find any collateral veins that need coiling, they will do this during the procedure and it then becomes an interventional procedure.

The heart cath involves sending a catheter into his heart through the artery in his groin. The catheter is carefully threaded through the artery to Tyson's heart and then a dye called "contrast" is injected into his heart. The cardiologists can then measure heart pressures, oxygen levels, and gain information on the structure and function of the heart in preparation for his Fontan surgery. Tyson will be intubated for the procedure (breathing machine) and will also be under general anesthetic, with the possibility of an overnight stay at Sick Kids, depending on how well he handles it.

My computer is currently at the shop getting fixed (again) so I am not sure when I will be able to post an update. Hopefully I can sneak away some time on Thursday to give a quick update.

Please pray that the heart cath will give the cardiologists the desired information in preparation for Tyson's next open heart surgery. Please also pray that God will grant us His peace and keep us calm in the days, hours, and minutes leading up to the procedure. It's always so difficult letting go of Tyson and letting them take him from my arms. Hopefully things go well, and they don't find anything too pressing that needs immediate repair, so that he can be in my arms again soon.