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!

Admitted!



On O2 and IV within minutes of arriving. 
Just wanted to let you know that Tyson was admitted to Headwaters hospital last night. Yesterday his cough got worse, he had increased work of breathing, and he spiked a fever. On arrival at ER his SATs were only 80-81 so he was immediately put on oxygen and an IV was started (after three pokes...eeek!) His white blood cell count was 28 (normal is under 10).

The first night in the hospital is always a rough sleep as the nurses go over his history, set up the needed medical equipment and as they figure out a convenient med schedule. We both didn't get a ton of sleep as we weren't settled in till almost midnight and then it was time for another IV dose at 5:40am so once Ty woke up we both didn't go back to sleep. We are now waiting for Dr Murphy to do his rounds and then make a plan.

Tyson has gone 14 months without a hospital stay - his longest stretch ever!  We were really hoping he could hold off until after the Superheroes Bowlathon on Saturday afternoon so we could enjoy it as a family, but in hindsight I am glad we decided to bring him in. He's had enough fighting for one season. Time to get his lungs completely healed so he can stop coughing and be healthy again.

As you know our family is participating in the Superheroes Bowl for Cardiac Kids today. We've been so excited about this event, especially Tyson!! We've worked really hard on fundraising - over $800! - and I've been very busy with everyone's Ninja Turtle costumes. The whole ninja turtle theme was Tyson's idea.  My Mom has offered to stay with Tyson while Brian and I go with the rest of our kids. She wouldn't even let me argue with her about it!  Tyson hasn't forgotten about the bowling event. But I also haven't told him yet that Grandma is coming to stay with him for a few hours. If he knew we were bowling without him he'd be very upset, so when he asks where I'm going I may have to skirt the topic a little.  He did ask about bowling yesterday and cried when he knew he was being admitted and that he was going to miss out. We'll see if he's forgotten or not. It will definitely not be the same bowling without him since he and other cardiac kids are the whole reason we work to raise awareness and raise money!!  We'll miss him while we're gone :(

Please pray that this is a minor bump in the road and not too long of a stay.

Please pray

Asking for prayers for Tyson again please.

As you know, Tyson often coughs all winter long, and well into spring.  We usually don't panic until it turns into that wet, junky sounding cough.  His last bout of pneumonia was end of April and took 2 weeks of antibiotics to heal him.  He literally enjoyed one week without coughing and feeling really great (so we snuck in a family getaway to Great Wolf Lodge!  Woot woot!)) and a few days later he started coughing again.  We started him back on ventolin masks again last week Wednesday and he's been on 4-5 ventolin masks per day since last week Friday.  Saturations at home are still 84-90. 

We were trying not to be too terribly concerned about this new cough, but this morning I took my oldest son to our family Dr to get his knee checked out, and I thought 'Hey, while we're here, I should get Dr Cormier to listen to Tyson's lungs...." 

Uh-oh...sats of 79-83 and down to mid 70s when he tried to cough it out...the Dr was extremely concerned and said he won't sleep tonight if he doesn't get Tyson x-rayed.  So he sent us to emerg for x-rays to make sure he doesn't have pneumonia.  We at least killed two birds with one stone and had Braden's knee x-rayed at the same time.  Had a quick McDonald's drive-thru lunch, a quick trip to the Dollar store for some last-minute costume searches (more about that below....) then I brought Braden back to school and went home with Ty and Addi.  Tried not to worry, sorted through some laundry, called Sick Kids to sort out Tyson's coumadin dosing for this weekend.  Since his last pneumonia we've been struggling to get his INR level back on track, it's been up and down like a yo-yo for the past three weeks.  Yesterday his level was 3.7 so I needed advice on what doses he needs and when to check it next.  That was a 35 minute phone call because his regular thrombosis Dr wasn't in so I had to relay his past three weeks levels/doses to the thrombosis Dr on call.

Phone rings again.  It's Dr Cormier.  Tyson's x-ray showed pneumonia and the Dr isn't sure if oral antibiotics are going to be enough to clear it up this time, since it is more profound than his last pneumonia-filled x-ray they have on file from April.  So he wants to discuss it with the pediatrician Dr Murphy to decide what to do and call me back.

Dr Murphy wants to meet Tyson in ER in an hour.  So I whip over to the school to grab my kids, whip home, pack an overnight bag, try to calm my children down who see me packing an overnight bag (a practise I always do when taking Ty to emerg for x-rays.....) cancel our girls night out plans to take Kenya to a Glama Girls Party in Newmarket (manis & pedis & pizza & cupcakes compliments of Glama Gals & Starlight Foundation)  wipe a few tears from Kenni's face and promise to make it up to her sometime by taking her out for a Mother-Daughter pedicure, grab a few snacks, and Tyson and I head to the hospital.

In ER where we have to register to meet Dr Murphy, Tyson's sats are 88 and he is acting perfectly normal.  I am thinking he is DEFINITELY not sick enough to be admitted to the hospital, so Dr Murphy and I discuss which route we should go and the conclusion is that Tyson will once again be put on oral antibiotics with instructions to rest....and if he gets even a *little* bit worse in the next hours or days until his meds are totally done, or if he gets a fever, or if he stops eating or takes a slight turn downhill....we have to pack our bags and stay at Headwaters for IV antibiotics to clear the pneumonia for good.  (FYI the pneumonia was in his left lower lobe this time, last time it was the right lower lobe.)  Dr Murphy said Tyson can attend his track and field day tomorrow only if he's feeling energetic but absolutely no running events.

Tyson was absolutely wiped by the end of the day so we're praying he has a good night's sleep and wakes up energetic and ready to carry on through life hospital-free.  

Please, please, please pray that we can avoid the hospital!  We have narrowly squeaked by about four times in the past year.... please pray Tyson remains well and can stay at home.

Our family is participating in the SuperHeroes Bowl for Cardiac Kids this coming Saturday!  Click on the link to sponsor us if you haven't already :)

I have worked very hard on our costumes, we are all members from Teenage Mutant Ninja Turtles.  Tyson has raised almost $800 for Cardiac Kids and we are SO EXCITED to participate in this event.  It would really be a big disappointment if Tyson can't enjoy this event with us!

Please pray.


Still fighting the Battle of Bugs

Tyson had a decent weekend and was able to return to school this week Tuesday.  We are thankful that he is coughing a lot less and is being weaned from his ventolin mask slowly.  The antibiotics have been successful in treating his pneumonia.

Unfortunately, he came home from school on Tuesday completely burned out and with a sore throat, headache and sore ear.  He was not able to go to school today because he is still recovering from this new bug.  He takes oregano oil really well, so a few drops under the tongue four times a day is taking good care of the sore throat, but his ear and head are still causing him a good deal of pain and he's been on Tylenol round the clock since Tuesday.  He is currently still on antibiotics for the pneumonia, so it's likely that the head/throat/ear/eye bug is a viral infection because otherwise the antibiotics would have fought it off.  Poor kid just can't catch a break!  How is it fair that he catches another bug while on antibiotics?  We're hoping the ear drops and oregano oil have him in tip-top shape by tomorrow evening for the school's musical production night!

These bugs have also resulted in five INR level checks within 10 days (and another one scheduled for tomorrow.)  The antibiotics have thrown his level for a loop, and I'm sure this new virus will too.  I'm so thankful for the CoaguChek machine so we can monitor his levels at home!  

After a very long winter, the up-and-down spring temperatures are finally here, but with it comes a lot of bugs. I know that with five kids, the chances of catching bugs are greater, and they can hit the kids all at different times, but it just seems that when one particular bug is finally gone, another one hits!  Addisyn had a very bad stomach bug in early April, then it hit a few others (not quite as hard,) then a head cold hit a few kids, then the pneumonia bug hit Ty and then it hit Addisyn (she thankfully is getting over it with the help of her brother's nebulizer.  Thankfully we have a few extra masks hanging around so we didn't have to wash them in between each use.)
Now we have this new head cold which has hit both Tyson and Kenya. 


One day at a time...

Slow progress...


Tyson is still struggling with the pneumonia.  The oral antibiotics are taking a long time to fully clear his lungs (and he was even on double the amount he should have been on for his body weight.)  He is sloooowly getting better, but still coughing and wheezing a lot and still having ventolin masks every four hours.   He's happier than he was last weekend, but he still doesn't have great amounts of energy and mostly does quiet activities at home, otherwise he starts coughing too much. 

We saw our family Dr today for a follow-up appointment.  This is common practice for us to make sure the infection has cleared.  The Dr can still hear pneumonia on the one side, so he prescribed Tyson 7 more days of antibiotics. We're thankful that Tyson's O2 sats are relatively stable (they get pretty low at nights when he's sleeping but still at or just above 80.)  So he won't need to be hospitalized for IV antibiotics or oxygen at this time.  We're praying that the oral abx are enough to kick this infection in the butt and return our little guy to his active self soon.  He hasn't gone to school all week and when we were there on Tuesday afternoon for his teacher's baby shower/good-bye party, he clearly overdid it and was completely zonked that evening and the next morning.  It was almost like he took a step backwards just from being in the gym and throwing a basketball around. 

We are having to check his INR level every other day because the brilliant ER doctor not only gave him double to amount of abx for his body weight, he also prescribed one of the worst abx that interferes with coumadin.  Before leaving emerg, I had the prescription in my hand and asked The ER doc, "Are you sure this one is ok to have with coumadin?  He's never had this one before."  And the Doc replied, "All abx interact with coumadin."  Well, I learned today from the family Dr that Biaxin is one of the worst ones for sending INR levels way out of whack.  In fact, when he entered Biaxin into his computer as if to write a prescription for Tyson, it gave him a 'warning' about prescribing Biaxin for Tyson.  He had to do so anyway, since switching abx part way through is not helpful at all.  So Tyson will have Biaxin for another 7 days.  Only this time he'll be taking half of what he had this week.  He's supposed to have 15 mg per kilo per day...Ty is roughly 17 kilos...that's 255 mg per day.  Tyson was originally prescribed 500 mg per day.  Which also contributes to his INR level being way too high and of course he got a nosebleed yesterday!  None today thankfully....

And in true Tyson fashion, his illness means our weekend plans change again.  Last weekend I missed out on the Labatt Family Heart Centre Conference at Sick Kids and this weekend we had to postpone our mini-get-away that we planned for our kids.  We were planning to pick the kids up from school at noon and go away till Saturday night, but had to cancel because the Dr felt it was best for Tyson to be fully recuperated first.  Of course this makes prefect sense, and it is what's best for Ty, but I'm still disappointed nonetheless.  It's a *really good thing* we didn't tell the kids about our getaway because at least they aren't disappointed and they don't know any better at all!!  This would be case-in-point why we never tell our kids anything until we *know* they're actually happening.  So we'll wait for Ty to be fully recuperated so that he can run around and go crazy like a five year old boy should.  

That's the update on our little man.  We're thankful that he can continue to fight this infection at home.  In your prayers, please pray that the antibiotics do their job and that he can start feeling back to normal again very soon (with no more nosebleeds!) 
Melissa