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!

Spring Update


Tyson has been doing pretty well since his last hospital stay in early April.  He had chest x-rays the first week of May to make sure the pneumonia had resolved, and it is gone.  He has been so happy and healthy for the last number of weeks and we praise God for His goodness in allowing our family good health.  
On May 8th, Tyson enjoyed "Kindergarten Day."  This was a practice day, to get the kids accustomed to the new routines which await them when they start Kindergarten two full days a week in September.  Tyson was SOOOO excited, you can't even imagine!  We counted down for a couple of weeks before hand, and whenever he talked about going to school he got so excited.  This made it much easier for me to let him go in the morning, although it was still pretty hard.  It also helped that I was the ‘Kindergarten Mom’ that afternoon, so I volunteered in the classroom for the afternoon.  He had a pretty good day but he does need to learn a thing or two about how to react in some social situations.  We will get there though.  

Getting ready to go on the bus, with his mouth still full of waffle ;)


So excited he can barely concentrate on putting his shoes on properly
He didn't walk to the bus stop, he skipped !
I can't believe I'm going to have four kids in school in the fall!
When he saw the bus coming, he was SO excited! 
Tyson's legs are so short he can barely get up the bus steps! 



We continue to expose Tyson to glue and try to get him working with it, and are hoping that once he starts school in September his gag reflex won't be as bad and he can tolerate working with it.  He has this weird aversion to things like yogurt, glue, soap, pudding, and anything goopy-looking.  We think that he has developed this aversion because when he needed to take medicine in the hospital, we crushed up the pill and hid it in a spoonful of yogurt.  So now he can't stand the sight of yogurt, or anything that looks similar to it.  He gags so bad his face turns blue, and once he even threw up from watching me work with a recipe that called for some sour cream.  That is a little extreme, and I did mention it at his last cardiologist appointment.  My main concern is that vomiting is a sign of heart failure, so I wanted to make sure they were aware that this is happening.  His cardiologist said to keep an eye on the vomiting, but also that it is very common for cardiac kids to have a very sensitive gag reflex.  The countless intubation/re-intubation from surgeries, cath procedures, and the use of a feeding tube throughout the course of their lives can sometimes damage the throat and airways a little bit and cause reflux and an over-active gag reflex.  We are working on ways to condition him not to gag as much.  It's not that big of a deal if he never eats another yogurt in his life, but he does need to learn to see and work with glue once he's in school.  His pediatrician explained it to us like how cancer patients develop aversions to foods they ate all the time when they were having chemo treatments, but once they start feeling better they want nothing to do with that particular food anymore because it reminds them of how sick they felt when they had chemo.  With Tyson, it's likely that he developed a dislike of yogurt because that is always how he had to take his meds in the hospital.  Now that he can swallow his pills with a glass of water or milk, he detests yogurt and can't even so much as look at it without gagging. And believe me, we’ve tried ways to help him get over it.  But he can't just "get over it" like we'd like him to.  If you're trying to help someone get over his fear of dogs, you don't just throw him in a pit of dogs and say "get over it."  It takes time and conditioning and it has to be done slowly.  We will get there slowly.  It's starting to get better as he learns ways to deal with it, like how he closes his eyes when we wash his hands with soap.  

As far as his health goes, Tyson has been happy and healthy and we’ve enjoyed a really nice spring.  He loves playing outside when his siblings get home from school, and we’re even enjoying some time outside in the mornings with Addisyn if the weather is warm enough.  He still spends the majority of his day doing quiet activities, like reading books in his bedroom, playing with his Spiderman house and action figures, playing games on the computer, playing Wii or watching some tv.  We know it does take a while to recover from pneumonia, but his O2 sats have never really recovered from his past pneumonia in April.  Having said that, we didn’t really notice if they decreased at all before he got sick in late March because we really only check his sats if we think he’s unwell or if he’s more grumpy than normal.  He used to sat in the high 80s while active and low 90s while asleep.  Now he’s at about 84-87 when active, and 88-90 while asleep (and that is based on our finger pulse oximetre, which actually reads about 2-3 percent higher than the hospital ones....so it's possible tha tit could be more like 82-85 when active and 86-88 when asleep.) This is still pretty good for his heart condition, considering he still has his fenestration open, but it certainly doesn’t leave a lot of breathing room for if/when he gets sick.  If his sats go below 80, he needs oxygen therapy, and since we don’t have that at home, he has to be admitted to hospital for that.  

Tyson has a cardiologist appointment this week Wednesday at Sick Kids, where he will also have an echo, ecg, and possibly more chest x-rays.  I will be phoning his cardiac nurse tomorrow to ask about ordering an x-ray for two reasons.  One: he has a weird pointy bump that sticks out of his chest from time to time; it comes and goes, and when it’s bigger he complains of a sore chest, or that he's itchy there.  As a heart Mom whenever your son complains about a sore chest, my own heart skips a beat because I am always on the look-out for any symptoms that could alert me to heart failure.  I don’t think it’s a heart function issue, I think there may be a wire come loose or something, but it definitely needs to be looked at.  The other reason I wanted to ask for an x-ray is because he started coughing again on Wednesday, and he doesn’t really have a cold (yet?) I’m so worried that he is on the verge of pneumonia again.  A lot of times when he’s coughing, his chest ‘sounds clear’ but an x-ray shows otherwise.  When you have a son whose had pneumonia more times than you can count on both hands, you kinda get to know what it sounds like.  I hope my suspicions are wrong, but we shall see how the week progresses.   

I am a little nervous about his appointment on Wednesday.  It has been SIX MONTHS since he’s been seen by a cardiologist, six months since he’s had an echo.  Yes, we actually have made it to six months this time!  But as we know, with our cardiac kids things can change so quickly.  I can’t say that I’ve noticed glaring symptoms that would make me think he’s in heart failure, but he has been having more frequent periods of cyanosis – blue spells - (which is most likely due to lower sats than we’re used to seeing) and occasionally he does complain of a sore chest or stomache pain.  He is sleeping more again these days, but this could be due to him spending more time outside and he’s just more worn out at the end of the day.  An echo will determine if his heart function has changed at all, but now that he’s started coughing, an x-ray is probably a good idea too.  

Other than the blue spells, the occasional stomache or headache complaint, he’s been having a great life.  It’s so good to see that spring is finally here!  We’re coming out of our shell and starting to get out in public more often!  I have taken Tyson and Addisyn to the library a few times this month, we’ve gone to visit friends, we’ve done some shopping trips, and been to a few birthday parties.  We've even started inviting company over for dinner on Sundays again.  It feels so good to do what normal families do.  It’s so nice that there aren’t as many bugs flying around now as there is in winter/early spring.  

In late April we spent a Saturday at the Labatt Family Heart Conference at Sick Kids, where Tyson and I sat on the 'patient/family panel' and answered questions for other families who are seeking support and information.  It was great to also receive suggestions and encouragement from other families when we expressed concern about Tyson's upcoming school year.  The kids enjoyed activities like crafts and games, and a rock-climbing wall outside on University Ave.   My Mom and Dad were able to attend the Conference with us, and it was a day of learning and education for us.  It was also great to catch up with some heart families we've already met, and get to know new families I've been 'facebooking' with and finally got the chance to meet in person. 
At the Labatt Family Heart Centre Conference

 Yesterday we spent the day at the baseball tournament in Dorchester, close to London.  The weather was a bit windy, but the sun was shining and Tyson had a great day.  He had way more energy than we’ve seen from him in a *long* time.  He was in a great mood, was full of P & V, he enjoyed watching baseball and playing catch with his brothers and their friends, loved the bus ride back and forth, and even got to see his heart buddy Denver.  Denver took some time to play catch with Tyson for quite a while, while his Mom and I caught up.  It was a great day and Tyson was exhausted by the end of it.  

Till next time.  I will keep you posted about the results from his upcoming echo this week.  As always, prayers for good health are always appreciated!   



















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