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!

September...So Far So Good!



   It’s high-time I post another update on Tyson!   Summer went well and he stayed extremely healthy, despite a small cold after we came home from a rainy, cold camping trip.  We did his chest physio and breathing exercises faithfully 4X a day, and kept up with his puffers, and we are amazed and thankful that he got over it without the use of his nebulizer machine or the need for antibiotics.  Of course we’re never sure what type of cold he’s catching when the symptoms begin, and we don’t know if it would have developed into pneumonia for him, but I’d like to say that the physio really helped him expel the gunk from his lungs.  I could definitely feel a rattle in his chest when he did his deep breathing exercises, but we’re thankful that nothing serious transpired.  And we’re certainly thankful that he could fight it without the use of antibiotics, nor did we have to turn to his nebulizer machine!    We give him oregano oil regularly as an immune booster, but give it 3-4X a day when we know he’s fighting an illness.

   Tyson had a CT scan of his heart and lungs in early August. 

We didn't know he'd need an IV (I should have figured that out!) but he was so brave!

CT scan
The respirologist reported back to me that there is nothing in his lungs that would pre-dispose him to pneumonia, and there is nothing in his lungs to indicate that he has any long-term damage from his recurring pneumonia. We're definitely thankful for this news!  In October Tyson will go for a complete immunology work-up at Sick Kids. 

   Tyson started Grade One two weeks ago and so far things are going fairly smoothly!  We were very prepared for him to be tired, grumpy, and run-down.  To be honest, we didn’t really think he’d have enough energy to go to school all day, every day.  But he has pleasantly surprised us!   

First Day of School
    Whenever I thought about Ty going to Grade One, I thought we'd need to give him at least one ‘mental health day’ per week, or at least every once in a while, but so far he is managing ok.  He goes on the bus every morning at 7:18am but I pick him up in the afternoons because the bus doesn’t drop-off until till 4:50pm, and I know that is too long of a day for him.  Not only that, with the medication and physio routines we have going on for Tyson, there just aren’t enough hours in the day if he goes home on the bus.  But he is doing ok, in pretty good spirits most days, smiling lots, loving school, and there have only been a few days that he was too tired to move afterwards.  But overall, he is adjusting much better than we ever could have imagined.

   Having said that, I have never had to have such a regimented schedule in our house in order to get Tyson to bed on time.  Dinner is served when dinner is ready.  Some days it's ready at 5:30, other days at 6:00, and sometimes it is even later than that, depending on our events for the day.  Now however, with Tyson getting up every morning at 6:30 for school, he HAAAAS to be in bed at 7:00pm at the very latest, or he won’t get enough sleep.  He has always needed between 12-13 hours of sleep per night, so I question whether or not 7:00pm-6:30am is going to be enough for him, or if it will eventually catch up to him.   As a result, dinner has to be ready by 5:30pm every night, because we have to start his physio and meds routine by 6:30pm in order to get everything done on time.  So dinner has to be ready on time every night, without fail, or Tyson’s sleep (and in turn, his health) will suffer.  

   It is a little stressful having to be that regimented, as normally we just take things as they come and go with the flow.  With five children, you have to have some sort of routine, but you also have to let things happen as they happen and not be too stressed out about the little things.  But I don’t consider sleep to be a little thing, for Tyson’s sake.  When he gets behind on sleep he can be very irritable, for one,  but he is also more likely to get sick. 

   I’ve also made a physio  meds ‘schedule’ and posted it on the fridge, and his physio exercises on the bulletin board in his room.  Tyson is on medications for his heart and his asthma, and a fair amount of vitamins and supplements to boost his immune system and keep his lungs strong.  I have been taking on his meds and physio all by myself, mostly because I’m the only one that can ever remember what he needs to take and when he needs to take it.  So if I ever want/need to get out of the house for an evening, for Bible study or committee meetings or just to get out, I want to be able to do that without worrying about if they are remembering Tyson’s meds.   If the schedule is organized and posted where all family members can see them, then they can follow the instructions without me.   I felt an immense pressure being lifted from my shoulders as soon as I did that.  I should have done it a long time ago, but I didn’t want to appear like a drill sergeant.  We have enough charts and check-lists posted in our house, without adding another one.  But now I’m glad I did it :) 

Dad caught a pic of Mom & Ty during physio. 

   Tyson has been handling Grade One like any of my other kids.  His teacher says he is tired at the end of the day, but most of the other kids are too.  I’m sure that picking him up from school most days is helping him cope.  He did come home on the bus once this week, and when he got home he was quite intolerable.  That was definitely  pushing it for him.  He needed his space, and we gave it to him, but I could tell it was too much for him.  So I will continue to pick him up from school as long and as often as he needs me to. To be honest, I really don’t know how I would fit everything into his evening anyway if he didn’t get home till 4:50pm and has to be in bed at 7:00pm. 
   I’m not sure how Tyson is keeping up academically, but I do know he needs to continue working on reading.  He hasn’t caught on to reading as quickly as my other kids have. First things first, we need to help him adjust to school full-time. 

   In the middle of summer, Tyson lost his first tooth!  Surprisingly, he didn’t bleed much longer than my other kids did.  This week, he lost his second tooth just after brushing his teeth on Thursday night…when he was already late for bed…because supper was late…because the kids had piano lessons after school…and I had to rush off to an Education Committee meeting at the school…. and Brian wasn’t home to help…AND Tyson bled for about 15 minutes.  So although we have our ‘schedule,’ it’s still likely that some nights it just can’t be followed. 



Now let’s see if Tyson can avoid the stomach bug that hit our house this weekend… :(