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!

Summer Days

Tyson and two of my other kids were enrolled in 2 weeks of swimming lessons in early July.  Despite the heat wave we're experiencing right now, the weather for the 2 weeks of lessons was not very conducive to a child with a heart condition.  Tyson has a hard time with body temperature regulation, and the weather for the 2 weeks of his lessons was cold, damp, and rainy on all but 3 days. As a result, he was not a happy camper during his lessons.  He was cold and blue and did not have a very good time at all!  But his teacher Alison made the best of it and handled him very well. 

I managed to take a few pictures on one of the nice mornings we had.  

Blowing bubbles
Starfish
This is how Tyson spent most of every lesson.  He was cold and blue and not very happy.  His teacher made the best of it, and laughed because despite his tears, he still did everything she told him to and even said a tearful 'thank-you' at the end of each lesson, even though it was clear he was not enjoying himself!
He was too scared to jump off the diving board, so Caely, his teacher from last summer helped him down while Alison caught him
For his last lesson we let him take Mickey Mouse off the diving board with him.  I'm so thankful the weather was warm on his last day.
Here is Alison keeping Mickey Mouse dry as they swim across the pool to the diving board
All done with lessons and trying to warm up
Kenni

Kenni jumping off the diving board
Merrick diving over a noodle
It's too bad that the weather wasn't extremely warm for swimming lessons.  He really does enjoy the pool at home.  The kids are in it EVERY day!  The scuba gear was a small investment considering that it keeps the kids entertained for literally hours every day.
My scuba kids.  (Devon in the background)
Tyson with big brother Braden. 

Summer is going very well so far.  Tyson is healthy, so what more can we ask for?  We enjoy life so much more when he's not coughing and we're not worrying about whether or not he has pneumonia again.

The kids spend most of their time poolside, or on the trampoline. They like to have the sprinkler running underneath the trampoline as they play mini-sticks or bounce around.  Even Addisyn enjoys the slippery, wet sprinkler.



 They also enjoy spending time with our new puppy Tazer.  He is a pretty easy-going puppy so far. 


Isn't he SOOOO cute?!?!

Braden sure adores him

And Tazer sure adores Braden too!

Braden trying to teach Tazer to come down the deck stairs.  He goes up but won't come back down.
The heat and humidity of this week has pretty much worn us all out, but for a kid with asthma AND a heart condition, imagine how much more tired he is! Tyson suffered a bit of heat stroke late last night, after three days of extreme humidity.  Any asthma sufferer can attest to how difficult it is to breathe when the air is so thick.  Combine that with a heart condition, and that's a brutal combination.  We let him go to his soccer game on Tuesday night to see how he would do, even though there was an extreme weather advisory.  We thought it was a good opportunity to see if Tyson really knows when he needs to slow down.  Well, he was only able to play about 10 minutes of soccer before he was completely out of energy.  The first half wasn't even over and he was by my side because he needed a break.  We dosed him up on ventolin to see if that would help but he sat on the sidelines for a long time. Then when he finally went back on the field again he only lasted a few more minutes before he gave up entirely.  I'm glad that he knows his own body well enough that he knows when he has to slow down.  He loves soccer so much, and I didn't want to let the other kids play and not let him go, but I am still glad to see he knew enough that his body couldn't handle it.  

Wednesday was another very muggy day, and Tyson spent most of the day sluggish and red-faced.  We spent most of the day in the pool and we try to hydrate like crazy on these days, but then we had the misfortune of our well pump breaking down.  So, we had no water!  Brian called a few uncles for help/advise and Uncle Willy came over to help dig out the well pump.  It turns out that the hose had corroded from the pump and Willy happened to have a spare part at home to fix the problem. So after a few hours of work and minimal cost, our water pump is fixed and is now running again.  We're so thankful that the problem wasn't too serious!

Today is a laze-around-the-house kind of day.  The kids are watching a movie downstairs while I sit and blog.  Last night Tyson spent several hours tossing and turning in his bed, crying and complaining of a sore tummy.  He complains of a sore stomache from time to time, and we keep a close eye on him to make sure the symptoms are nothing more than just that.  (Fontan kids will develop liver problems so we're always on the alert for weird symptoms or complaints of pain in that area - or the chest area.)  After several hours of him not sleeping and either Brian or I going to his bedside to comfort him, I gave him some Tylenol to knock him out. Later on he did throw up a little, but not much for what you'd call the flu.  I finally crawled into bed with him at 5am and then we both slept till 8am.  I'm pretty sure it wasn't the flu because the first thing he asked for in the morning was his hot chocolate, and then proceeded to wolf down a pancake for breakfast.  He's definitely not himself yet but I'm almost positive it was heat stroke.  We're working hard to hydrate him better today. 

We're hoping and praying that the humidity calms down very soon.  These poor heart babies never catch a break.  In the winter it's nothing but colds, flus, and pneumonia, and in the summer they can't breathe through the humidity :(  Praying for a break in this heat soon.

Melissa
































Three Wonderful Milestones

When you have a child with serious heart defects, every small milestone is worth celebrating.  Depends what you call a 'small' milestone, I guess.  Today we are celebrating three wonderful milestones. 

One is that Tyson has been discharged from the Wee Talk program!  We said a tearful, bittersweet ‘good-bye’ to his speech/language pathologist this afternoon.  We’re very sad because we LOVED him and will surely miss him. This is a man who would lay on the floor beside Tyson as they played their ‘boy’ games together.  He knew exactly what made Tyson tick,  he knew how to push Tyson’s buttons to get him to focus, to get him to continue on with the learning.  Most of all he made learning fun!  As hard as good-byes are, we are SO THANKFUL that Tyson no longer needs to see a speech therapist and will not be referred to CCAC for speech therapy once he starts school!  This means we have one less therapist and one less appointment every month!  I’m so proud of Tyson and how hard he’s worked on his sound and word articulation and how well his language skills are developing and improving. 
The other thing we’re celebrating today is that Tyson has also been discharged from the Infant-Child Development Program.  Obviously, once a child starts school, they would be let go from the Infant Child program as the name suggests.  But to top it off, Tyson will not need further referrals to any other programs.  He definitely has some areas we need to work on with him, particularly his social skills, self-help skills, attention span, memory, impulse control and mood changes J  But we’re getting there.  One step at a time.  The psychologist who signed off on Tyson’s report did indicate that, considering his complex medical history and the number of procedures he has undergone, she is impressed with how well he’s doing.  Man, that’s music to a Mama’s ears J  Tyson’s Infant-Child Development Worker, Chris, will visit us one more time in the fall, and we will indeed be sad to say ‘good-bye’ to her too.  She has been coming into our home almost monthly since Tyson was 10 months old.  She has poured out her heart and soul for Tyson’s well-being, monitoring his development to make sure he’s on the right path, and giving encouragement and support where needed.  She has showered Tyson with love and with gifts, and she even visited when Ty was hospitalized in March/April.  She also facilitated “The Spirited Child” workshop that I attended to learn how to cope with ‘spirited’ kids like Tyson.  We both love her.  (And I happen to know she reads this blog…so to Chris: THANK-YOU FOR EVERYTHING!  Thank-you for loving Ty, and accepting him, and working with him when he wasn’t always willing to work with you.  You will always have a special place in our hearts and you will be greatly missed! 

One last thing we remember today.  Today marks 18 months that Tyson has been free from any heart procedures, surgeries, or interventions.  Of course this doesn't include his regular tests like the ECGs, Echoes, x-rays, etc - those are very common still and will very much be a part of his life forever. But we also pray that someday we can celebrate 18 months hospital-free, or 18 months oxygen-free!  If the LORD wills it, we'll get there someday too.  
Eighteen months ago today,  Tyson had his last heart cath procedure (his ‘last’ but probably not his ‘last.’)  I remember that day so well.  I was 38 weeks pregnant with baby #5 and I'll admit it:  I was a STRESS-CASE.  How could we possibly be having another baby, knowing that the likelihood of Tyson needing a transplant was so high?  For the first three years of Tyson's life, there was *always* another surgery looming in the future...always another heart cath needed to assess his heart status or attempt a fenestration closure...always another hospital stay right around the corner.  What was I doing having another baby?  And Brian and I were both exhausted with all kinds of extra appointments for Tyson and for our unborn baby.  Stress levels in this house were an all-time high.

But look how God has so richly blessed us!  Addisyn turned out to be the best thing for our family (doesn’t He always know what’s best?)  She was a very happy baby right from the start, sleeping well though the night, and very happy during the day.  Tyson was hospitalized when Addisyn was four months old, but Tyson was able to stay at our local hospital so it was much easier for Brian and I to take shifts at the hospital, and my Mom took some night shifts too.  So it all worked out, as it always does. God has a way of doing that, doesn’t He?  Thank-you Father!

I’m getting side-tracked.  Back to the 18 months.

Let's face it.  Eighteen months without any heart procedures is a long time for a kid with Tyson's complex anatomy.  18 months without a general anesthetic.  18 months without a breathing tube shoved down his airways.  It's not just the HRHS which would be reason for multiple heart procedures, but Tyson also struggles with pulmonary vein stenosis, which is our biggest concern right now.  His extremely narrow pulmonary veins cause high pressures in his heart and lungs, which is why his fenestration can’t be closed.  The high pressures also cause his blood to ‘shunt’ through his fenestration left-to-right instead of right-to-left as it should.  The cardiologists aren’t really sure how or why it seems to be working for him, but for now it is working for him.  For the past 18 months, God has given Tyson a 'break' from any open-heart surgeries or heart cath procedures.  And our whole family has been given a break from that worry and stress.  (Ok, so the two hospital stays in the past year haven’t been very fun but at least he hasn’t had another heart surgery.)  We are SO thankful.  
 Speaking of procedures….

UGH.

Tyson has to have a cardiac MRI at Sick Kids in September.  MRI gives a better picture of how his blood is flowing in and out of his lungs.  Compared to open heart surgery, this is a cake-walk.  But since Tyson is so young, he will have to be intubated and under general anesthetic for this.  I asked (begged) the MRI department if they could just sedate him with chloral hydrate (same stuff they used for his echoes when he was a baby) instead of intubating him.  The chloral hydrate makes him sleep for 4 hours and he wakes up a very angry drunk…but at least they aren’t intubating him and messing around with his airways!  Tyson is very prone to pneumonia, so anytime they mess with his airways he’s at risk again.  But MRI department told me they need Tyson to lay perfectly still and calm for over an hour, and at one point during the test he’ll need to take a very deep breath and hold it for about 15 seconds.  If he was sedated with chloral, he can’t take a big breath.  If he’s intubated, they can control his breathing and can get the pictures they need.  *sigh*  I can;t picture Tysonlaying still and calm as they slide him into a tightly enclosed tube...and apparently it's very loud in there too.  Tyson would not be good in this situation at all.  So it looks like on September 20th, he will be intubated and put out again.  Which also means we have to keep him healthy for the procedure, so if he catches a cold they will cancel the MRI and re-schedule.  He’ll likely have to miss a week or so of school to ensure good health prior to the MRI.

Then in early November Tyson will go back to Sick Kids for a bone density scan, some blood work, and an appointment with the thrombosis team.  Kids who are on long-term Coumadin are at risk for bone density so they need regular scans to monitor his bones.  They usually start scanning when they turn 5.  The scan itself is much like an x-ray, so he won’t need sedation or anything for it.  Tyson won’t be too worried about that.  The blood work is another story though.

Then late in November we go back to Sick Kids again for his regular six-month cardiology appt, Echo, ECG, etc.  We have to wait over two months to find out results from his cardiac MRI.  Last MRI he had (exactly 18 months ago!) he had 18% blood flow to his left lung.  I am really hoping and praying that the number does not get any lower.  18% is a really crappy number.  They did try to repair his pulmonary veins when he had his last open-heart in December 2010, but it didn’t go as well as planned, and it didn’t do much to improve his blood flow.  We’ll see what the next MRI in September shows and I’m sure we’ll need prayers as we wait 2 months to find out the results.

Not wanting to end this blog post on a sad note, let me repeat again why I started this update today.

Eighteen months procedure-free!  No more Speech therapy!  No more Infant-Child Program!

God is good.