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!

Stomach Flu :(

OF COURSE!  Murphy's law told me NOT to write that last post about how healthy Tyson has been.  But I can't help being so excited that he's been so well.

Well, that is until yesterday.  Tyson came down with a stomach flu :(  On Tuesday he was very 'off' at school and we knew it was either a result of a late Sunday night or that he was coming down with something. 

Wednesday morning he continued to be 'off' and then after lunch he complained of a stomach ache and then the bug overcame him.  Nooo fun.  Especially since his first round happened while we had 5 kids crammed into my sister's van.  Thankful for plastic bags and baby wipes!  Tyson slept off and on in the afternoon and still went to bed at a good time last night.  He slept well through the night except for having to get up twice for more water.  Brian and I are so thankful he was waking up for water.  With any child, there's always a concern about dehydration when they get sick.  But with a cardiac kid, dehydration puts extreme stress on the heart and puts him at risk of all kinds of things like cardiac arrhythmia or even stroke.  So we're thankful he was still drinking well :)  

We kept Tyson home from school today (obviously) and he's been looking pale and 'bluer than normal' so of course I am checking his O2 sats.  They are very up and down so I am keeping a close eye on them.  If Addisyn hadn't just had a stomach flu last weekend, I would be very concerned about his heart health since vomiting, fatigue and cyanosis are signs of heart failure.  (Still always in the back of the mind even when you know/think it's an intestinal bug....) This bug has really been making its rounds, so we're going with the assumption that this is indeed a stomach bug.

Tyson has been sleeping since 1:00pm and it's now almost 4:30pm.  I better go wake him and see if he's ready to be up and around.

Chow for now.  Still praying for a healthy March!

March Update: So Far So Good

We are half-way through March and Tyson is holding up 'amazingly' for March.  Those of you who follow his blog or know our family well know how much March can be a difficult month for us.  Of Tyson's five years of life, he has been hospitalized in March every year except once.  In 2012 he managed to pull through March but was hospitalized in June instead.  Last March we spent time in the hospital with both Addisyn and Tyson.  March is definitely not our favorite time of year.  Spring and Fall are difficult seasons for most asthma-sufferers, but add a complex heart anatomy to that and you have trouble brewing in spring and fall. With the changes in the temperature, lots of viruses and bacteria float around putting Tyson at risk of developing pneumonia and needing antibiotics and oxygen.  Maybe this year with the crazy cold winter we've had, the spring weather won't hit us till April...and maybe Tyson will make it through March no problems but struggle in April instead.  Either way, we are geared up and ready and I already have our hospital bags half-packed ;)

Right now Tyson is SUPER HEALTHY!  So healthy, he's been off his nebulizer for two weeks and only taking Flovent through his aerochamber twice a day.  He continues on the Singulair pill which manages his asthma symptoms throughout most of the year.  (And his regular heart meds of course.)  Brian made himself a Dr appointment on Tuesday because he developed a very serious chest cold (coughing up blood is never a good thing, is it?) This would have had serious effects on Tyson if he were to catch it, so Brian was given a five day antibiotic and his cough is now clearing up quickly.  So far Tyson is still doing great!And he hasn't had a single nosebleed since late January.  His INR level is stable as long as he stays healthy.

A few weeks ago we had a physiotherapist visit our home to teach us how to do chest physio exercises on Tyson for when he does develop a cough.  She also gave us ideas for deep-breathing exercises that will help keep Tyson's entire lung inflated and keep good air entry throughout the upper and lower lobes.  Often his pneumonia settles into the lower lobe of his lung, perhaps because he doesn't take full, deep breaths, and practising deep-breathing and staged breathing exercises will hopefully keep the fluid moving around and not brewing into infection.  We are hopeful that these techniques will improve his symptoms and possibly prevent pneumonia and the need for antibiotics or oxygen.

We've enjoyed a nice March Break with the kids.  They had some sleep-overs, we had a day out with my Spanninga seestas, we got to see the new Lego movie, and the older boys played in an all-day hockey tournament. Today Brian is busy painting Kenya & Addisyn's bedroom.  We've been promising them a new colour for a long time and it's finally time to get some rooms painted in this house.  Braden and Merrick's room is next.

If all goes well this spring and Tyson continues to stay healthy and hospital-free, our plan is to move him into the basement bedroom with Braden and Merrick, and then convert Tyson's bedroom into an office.  This will be a very big step for me - not having him in the room right next to me where I can hear him if he's coughing or not sleeping well.  But with Brian's carpentry business, we desperately need an office to contain all our paperwork and files, and have a quiet place to work, make phone calls, and do the bookkeeping. We will likely keep Tyson's hospital bed in his old bedroom (the office) for at least a while, for those times when he does develop a cold and is coughing a lot overnight.  Then we'd need to keep him closer to us at nights so we can hear if he's struggling and needing more ventolin.   If all goes well, Tyson will move into the basement bedroom with his brothers in the fall, when he starts school full-time.  Wow, I can hardly believe I just typed that.  This is happening way too fast! 

That's the March update from our household.  We're thankful for good health.