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!

911 Nosebleed


I can't believe how long it's been since I've done an update about Tyson!  The month of June just flies by, doesn't it?

Since the last time you checked in, Tyson had just been released from the hospital from his pneumonia.  He came home on a Monday, had a few days of rest at home, and then was ready for to school again by Thursday.  On his very first day back to school, he suffered a nose bleed.  It started slow at first; the teacher called me and I hurried over but by the time I got there, it had stopped.  An hour later it started up again and this time he bled so bad that he was swallowing large amounts of blood (as much as we tried to keep his head tilted forward) and he then began throwing up blood.  After an hour and fifteen minutes without slowing down in the least, we had to call 911 to have an ambulance escort us to the hospital Emergency Room.  With Tyson having just recovered from pneumonia and being hospitalized, I was concerned that a nosebleed of that nature would cause his hemoglobin level to be too low, in which case he’s need a blood transfusion.   I was also concerned about the amount of blood that he was throwing up.  It always looks like more than it really is, but still - who likes to see their five year old throwing up blood?  Thoughts were running through my mind like crazy, "I have to get this kid to the hospital, this is going on way too long.  I can't drive to the hospital and hold onto his nose at the same time.  Do I get a school staff member to drive us to the hospital or do I call 911?"  I'm so thankful that I listened to my gut in calling 911, because as soon as we were settled into the ambulance, Tyson began throwing up even larger amounts of blood.  He was crying and panicking, I was emotional at the sight of so much blood coming out of my little five year old, and the paramedics were faithful in keeping us both calm. 

Once Tyson was seen by an ER Dr, they did some blood work to check out his levels.  The Dr couldn’t do much to stop the bleeding since his nose is too small to be packed and she was afraid it would do more harm than good.  Blood work was done, his hemoglobin level was normal, and his INR level was actually a little on the low side for him.  (1.5) Surprising, considering such a bad bleed, we'd expect his INR level to be way too high - like 3 or 4.  The ER Dr said the bleed was likely due to the dry hospital air during his last hospital stay, and not having the saline spray, Vaseline, and humidifier routine that we normally have at home.  The bleeding finally stopped at 5:00pm that afternoon (it started at 1:30pm – not including the small nosebleed an hour earlier at 12:30pm)  The ER Dr sent us home and referred Tyson to an ENT for follow-up, since he tends to get frequent nosebleeds.

It was quite a traumatic month for Tyson.  Within a matter of three weeks, he experienced a teacher change in Kindergarten (which always takes some adjustment,) then a hospital stay for pneumonia, and then a nosebleed that sent him to the hospital by ambulance.  For a few weeks after those incidents, he became very clingy and didn’t want to leave my side for even a second.  If I was ever more than a few steps away from him he would cry hysterically. I felt guilty for leaving the occasional evening to go to Bible study or meet up with friends because I knew Tyson would be uneasy.  Even if we tucked him into bed first so he wouldn’t know that I was leaving, he would come out of bed several times asking me if I was staying home.  He became so uncertain and so mistrusting of anybody else but his mother, that I had to lie to him if I wanted to go out anywhere.  He even started to get a little delusional about things that might happen to me while I'm gone, or things that might have happened to his siblings if their school bus was a little late coming home.  I am thankful that it was just a passing phase, because I was beginning to get concerned about having to take him to see someone about his anxiety.  He also hasn't had a single nosebleed since the 911 incident. Maybe that has helped and could be why he has gotten better with me leaving him for a while.

A week after the 911 nose bleed, we saw a local ENT who looked up Tyson’s nose with a special light and said that there are 5 or 6 vessels on each side of his nose that will need to be cauterized.  He could see the one that had caused the last nosebleed and he said it was quite large and would need to be done as soon as possible, because any little thing could set it off again and we’d be in the same position as last time with having to go to the hospital.  However, because there are quite a few on each side (and both sides can’t be cauterized at the same time) he said he’d need Tyson to stay still for several seconds while he burned off the vessels…I assured him Tyson would not sit still for a procedure like that and it would not be a pleasant experience for anybody involved.  The ENT then recommended that Tyson be sedated for the procedure, but with Tyson’s complex cardiac history the anesthetists in Orangeville wouldn’t be comfortable with it so it’s off to Sick Kids we go for that too.  Dr Riddell put in a referral to an ENT at Sick Kids and we’ll wait to hear from them. 

That’s all for now.
Melissa

HOME!


We are so happy to report that we are HOME!  Tyson's O2 sats are back to normal, his energy is mostly back to normal and the air entry into his lungs is much better.  He still coughs a fair bit with activity, but I tried hard to give him a quiet day today.  He won't be ready to return to school tomorrow yet so we'll aim for Thursday if all goes well.  He will continue on oral antibiotics for the next 5 days. 

His brothers and sisters were SO excited to see him home.  We’re feeling so blessed that this was just a short stay, and happy that we caught things in time before they got too serious (even though we were all praying he could hold off on needing oxygen help until AFTER the Superheroes Bowl…but oh well.  This isn’t the first time our family has missed out on exciting events, or had some members missing, and I’m sure it won’t be the last.) 

Tyson set two new records for himself: longest stretch hospital-free (14 months) & shortest hospital stay (3 nights/2 days.)  

Praising God for His goodness!  Thank-you all for your prayers.

Brian and Melissa

Making Good Progress

Tyson is making good progress in the hospital.  He has been off oxygen since Saturday morning and only needs his sats monitor hooked up overnight in case his oxygen level drops and he needs oxygen.  He didn't need O2 at all last night!  His sats are looking great at 88-92 (where they are when he's good and healthy) but the air entry into his left lung still isn't good enough to go home quite yet.  The IV meds need to continue for a while to clear out the infection. 

Thank-you to everyone who donated to the Superheroes Bowl for Cardiac Kids May 31, 2014.  My Mom came to the hospital Saturday afternoon to stay with Tyson so that the rest of our family could participate in the bowl-a-thon in Woodbridge. It definitely wasn't the same without Ty.  Boooo :( :( :(  But we did enjoy ourselves and raised $850 for Cardiac Kids. We also won the "Team Spirit Award" for best costumes!!! (The hard work paid off!!)  As a prize we won six tickets to Canada's Wonderland! Woot woot! The kids are so excited!! 


Although I didn't tell Tyson where I was going when I left the hospital yesterday, we did tell him we went to the Superheroes Bowl.  He looked a little sad but we promised him we'd go bowling again soon.  In our basket of goodies from Cardiac Kids, we received coupons for free bowling.  So we promised Tyson that we'd all go bowling in our ninja turtle costumes again just for him, once he's feeling better.   He was fine with the fact that we did the bowling without him, but when I showed him this picture today, he almost cried.  He realizes that he's missed out on that fun so I better not rub it in. 
 
So fun, but our family is definitely not complete without Tyson :(   

Team Super Why
After the bowl-a-thon, the whole family came back to the hospital for a quick visit with Tyson.  They all miss him so much and he misses them too.  Even though we're not that far away geographically (compared to Sick Kids,) we all shed a few tears when we had to part ways again.  If you think this gets easier, it doesn't.  It becomes more familiar but it does NOT get easier.  I have tears as I'm writing this, remembering Kenya's crocodile tears in the hospital lobby as she hugged her brother good-bye.  Braden and Merrick did a pretty good job trying to hide their tears, but they can't fool me.  Brian and I both reminded them that we're not that far away, and if Tyson was at Sick Kids instead of Headwaters, it would mean he's much sicker than what he is now and it would be a whole lot harder to say good-bye.   

Tyson is in very good spirits in the hospital which is so helpful when looking after him.  Most hospital stays are quite exhausting when he's grumpy and uncooperative.  He's having a good time playing on Braden's iPod, watching tv, playing with his new toys from Grandma & Grandpa Spanninga, and reading Superhero stories.  This morning we were even allowed to leave the room and go for a walk.  He didn't mind having to wear a mask if it meant he could get out for a while!


Since he's not hooked up to anything, we were even allowed to get some fresh outside air!

We had to say hello to Bruce McMoose, the blue moose that lives just outside Tyson's bedroom window.

Hidden in the garden outside Ty's room is a gardener made of flowerpots.

Tyson's IV only needs to be hooked up when it's time for his next med dose.  Because he's still eating and drinking well enough, his IV meds are not given by continuous drip but just a bolus every eight hours.  This means we don't have to worry too much about retaining fluids like we would if he was on a continuous drip, and so we also don't have to measure his 'ins and outs' as strictly as we usually do.  No measuring every thing that goes into his mouth, and no measuring his pee.  (Hey, I appreciate the little things in life, ok?)

No IV drip, no oxygen, and no sats monitor means: his hands are free!  Being off oxygen is such a big help too,  no oxygen tank to lug around if we want to get out of the room.  And he can actually walk to the bathroom by himself rather than having to manouever around tubes and wires.

A huge advantage in his recovery this time around is not needing the oxygen for too long.  Most times he needs 5 days of IV meds and then it still usually takes an additional two days to wean him from the oxygen before going home.  But this time he only needed to oxygen for the first night and if he continues on this route, we should be home in no time.

The kids are going to stay at home with Brian for the rest of the weekend, then I believe the plan is for my Mom to stay with Tyson tonight while I go home to be with Brian and the other kids.   We'll get the kids on the bus in the morning, Addi away to a babysitter and then I'll be back with Tyson for the day while Brian goes to work.  It's a little easier when the oldest is old enough to babysit so the three oldest can be on their own for an hour after school before Brian comes home from work.  I like that we don't have to juggle the kids around as much as we used to.  What a blessing that Brian can continue on with a regular work schedule because the kids are old enough to be on their own for a bit.  It's just Miss Addi who needs someone to help look after her. 

Here's hoping the next update is from home?!?