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!

April Happenings

On April 1 we had a party to celebrate Tyson being hospital-admission-free for ONE WHOLE YEAR!  God is good!  We had a little celebration with our family, we ate "hangaburs" for supper at Tyson's request, and we topped it off with cake and ice cream.  I wish I would have taken pictures of the day because it should go down in the books as an important milestone for Tyson for sure!  Considering he spent his first two and a half years in and out of Sick Kids, one whole year is something to be very thankful for.  It was a close one in January when he had his heart cath; he was almost admitted overnight because the cath ran late and took a long time, which made his recovery time run well into the night.  Fortunately, we were allowed to go home at 10:30pm and we made it home to sleep in our own beds. *phew*  

This winter has been a crazy one temperature-wise.  With all the ups and downs on the thermometer, we've all caught our fair share of colds and flus, Tyson included.  The blessing of this year is that his asthma is well under control and the nebulizer and Singulair are doing their jobs.  Even when Tyson does catch a cold and his sats drop, they are still well into the 80s.  Lately he is sitting in the high 80s, low 90s.  It is such a relief that God brought him through the entire winter without a single hospital stay!  And he even survived the month of March!  

Tyson's energy levels have been good.  He still runs around like crazy, huffing and puffing a bit, but he sure does have energy.  Along with the energy of a three year old, comes the attitude of a three year old.  This is something we find exhausting to deal with sometimes because Tyson has such extreme temperaments.  He can go from 0 to 10 in the blink of an eye.  One second he is joking around and having us in stitches, the next second he is extremely irritable and angry.  We've always known he's had a temper, but the extremes in his personality are very difficult to deal with.  He's also not very social and is very uneasy and uncomfortable in large social gatherings, especially in new social situations.  It doesn't matter how much or how little we prepare him for an event, he just gets very grumpy when we're there, and sometimes he seems very scared.  We know he has issues with trust and frankly, can we blame him?!  But this is where we find it difficult knowing HOW to deal with the behaviour.  We understand that his fears and uneasiness are a result of what he's been through in his life, but that does not excuse rude or ornery behaviour.  He needs to learn how to behave in social situations.  Some people say that we need to take him out more often.  But this is hard because when we do take him out, we never know which Tyson is coming with us:  happy Tyson or grumpy Tyson.   

A prime example of this is our recent trip to the dentist.  Tyson has been to the dentist a few times before when my other kids had to have their cleanings.  He's always been good when they take him for a ride in the chair and they look in his mouth to count his teeth. Even when he had to have his teeth looked at briefly by the dentist before his last surgery in 2010 to make sure he didn't have any infections or cavities, he was fine. But this past appointment was horrible.  Of all the difficult days I've had to deal with his unpredictable behaviour, this was by far the worst.  He was happy on the way there and seemed okay in the waiting room. Once we got into the room he kept asking if he was having needles. I had to keep reassuring him that there would be no needles and they were just going to polish his teeth.  He had a little freak-out when he saw the scaling tool but the hygienist eased him by letting him play with the little mirrors.   She even let him push ALL the buttons to work ALL the dental tools.  He was fine sitting in the chair and going for a ride.  He was fine as the hygienist showed him how to work the chair, he even got to give me a ride in the chair. But the second her latex gloves went on and the mask was over her face, it was GAME OVER.  He went absolutely snaky right there in the dentist chair!  I tried everything to reassure him that there would be no needles but he was absolutely inconsolable.  He was so terrified that he was going to get a needle and there was *nothing* I could do to convince him he'd be ok.  Usually bribery or singing work with him, but he was absolutely inconsolable, totally beyond reasoning. The hygienist was very good and tried her hardest, but he just couldn't calm down enough to let her in. I've never seen him react that badly, not even when we get his blood work done!  I finally asked the hygienist to take off her mask and then he was a *little* better. He sat on my lap so I could hug him tightly (and hold his arms down LOL) and they did manage to get a *bit* of cleaning done. 

But you know those times when you hear a kid acting like a spoiled brat in the grocery store? freaking out and stomping his feet because he doesn't get his way? and you think to yourself that "that mother needs to learn a thing or two about discipline?" Yeah, THAT. Really, I don't blame the kid for having trust issues but how do you reassure a 3 year old who has been through what he's been through that "this won't hurt."   It's so frustrating and it really tests our abilities as parents.  Ech, just recalling that day makes me sweat.  

And then a week ago when Tyson had to have his blood work done again, he actually turned around and KISSED THE NURSE WHO DRAWS HIS BLOOD!  He hates getting the blood work part done, he screams and fights in anticipation of getting his arm poked but once the needle is in he's usually fine and sits quietly watching the blood go into the vials and talking to the nurse Jen.  So.... he freaks out at the dentist? but he KISSES THE NURSE WHO DRAWS HIS BLOOD?  What a weird kid!  *insert confused shoulder shrug here*

It's not always *that* bad.  If we're at a large social gathering (like the Dessert Social or a friend's birthday party,) he doesn't usually go crazy like that but he definitely makes it clear that he does not want to be there.  And when we go to someone's house for the first time, he is usually a little timid and nervous but eventually, once he realizes that it's a fun place to be and they have lots of cool toys, he will slide off my lap and go play.  This is something we obviously need to continue working on and hope that things get much better before he starts Kindergarten in the Fall of 2013.

There's never a dull moment when you're raising a three year old boy on blood thinners.  There's always a danger that a bad head injury can lead to a brain bleed (because his blood doesn't clot as quickly as yours or mine.)  The other week he fell head-first out of our van which was parked in the church parking lot, and he smacked his head on the cement driveway.  I went running with him inside the church building to find some ice.  To no avail.  I was in such a panic and I couldn't find any ice (ice will reduce the swelling and hopefully prevent major bleeding inside his head) so I ended up smacking a frozen pie dough on his head!  He ended up with a minor cut on his head, which I guess is a good thing because it meant the blood could get out instead of pooling up inside his head.  We woke him up a few times that night to make sure he was okay.  It was a very good thing that Tyson's big brother Braden was standing right beside the van to help break his fall a little.  He still landed head-first on the hard pavement and he smacked his head pretty hard, but it would have been much worse if Braden didn't half-catch him.  We learned a very valuable lesson that day: to always have an ice pack on hand.  I went out the very next day and stocked our van with a first aid kit including an ice pack and lots of gauze.  

Tyson is really enjoying his baby sister Addisyn.  I thought that out of all of our kids, Tyson would be the one with jealousy issues because he's had so much attention in the last three years.  But no, he is not jealous.  He loves her to bits, kisses her non-stop, and he even argues with Kenni whose little sister she is.  

As I mentioned in my last post, Tyson is in the Make-A-Wish process right now.  After filling out all the information about Tyson's interests and most cherished wishes, the foundation narrowed his wishes down to two options:  I wish to meet Sidney Crosby or I wish to go to Walt Disney World, Florida.  After MAW gave us some more information about the celebrity wishes and how they can't guarantee how much time or attention the celebrity will spend with the wish child, as well as how much would be offered on a trip to Florida, Tyson hands-down chose Florida.  Once we mentioned all the rides he would enjoy, the sunshine, the beaches, plus staying at the Give Kids the World resort, as well as tickets to SeaWorld and 3 Disney parks, it was an easy decision for him.  The next decision we had to make as a family, and in consultation with his doctor, was the timing of the trip.  We want to go at a time that Tyson is at his healthiest, as well as at an age that he would enjoy it the most, without waiting too long in case his health starts to decline.  So we are aiming for February 2013.  In the meantime, we are getting all the appropriate documents ready in case we need to leave earlier.  Tyson does not have an echo at his May cardiologist appointment (he'll still have an ECG) but he will have another echo in August.  If the strength of his heart has changed at all since his last echo, we would aim to fulfill his wish trip in the fall 2012 instead.   We can't help to think that if Tyson made it through this winter so healthy and strong, that we will be ok to wait till next year.  However, we also know what once a heart begins to decline, it often does so quite quickly.  Here we are reminded of the text in Proverbs that says, "Many are the plans in a man's heart, but it is the LORD's purpose that prevails."  (19:21)  

Tyson is having a hard time understanding that we aren't going to Disneyworld until February.  Obviously time concepts are difficult for any three year old.  On our way home from F-Stop to get our passport pictures taken, when we pulled into our driveway Tyson began crying that he didn't want to go home.  I said, "Well, where did you want to go?"  He said, "Disneyworld."   I made a chart for him, complete with pictures of all the activities that need to take place before we go to Disneyworld.  Hopefully that will help him better understand.  However, with all the snow we've had over the last two days, Tyson now thinks it's Christmas time and we are leaving for Florida in two more months.  What a guy :)





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