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!

February Update



Tyson has been doing relatively well so far this winter.  He has dodged the hospital a couple of times already, and thankfully cold & flu season is halfway over.  Brian and I were able to get away on a holiday for a week while Tyson was at his healthiest.  The reason he was super healthy when we left was because he got pretty sick a couple of weeks before we left, so he had just completed a round of antibiotics before we left.  We are thankful that he squeaked by (narrowly – twice) without being hospitalized.  The oral antibiotics took a little longer to work their magic this time around, which is why we say he narrowly missed a hospital admission…twice…but they finally did work and his lungs were clear when we left for our trip to Dominican Republic.  It’s been over 13 years since Brian and I had a week away without any children.  Tyson stayed with my sister Melanie while we were gone and by all reports, he was well-behaved and very healthy while we were gone.  Our older three kids were at family or friend’s houses, and Addisyn stayed overnights with my Mom & Dad and then went next door to my sister-in-law Lea’s during the mornings that my Mom worked.  Everything went well from what we hear and I didn’t even worry about Tyson or Addisyn toooo much.  

We had an awesome trip.  It was great to get away, to enjoy the beautiful sunshine, to flake out on the beach or by the pool, and not have to cook or clean, discipline or admonish.  We even finished our sentences for an entire week without being interrupted by children.  I am also pleased to say I read an entire book that week and got half-way through another one while we were there (and I have yet to read a single page since we got home…might have to go back to Dominican next year to finish that book…)   Brian and I both feel so blessed that we had opportunity to go.  The resort we stayed at was amazing, the food was fabulous, and the company was great too.  Now it’s back to reality in the great white snowy north.
This was the view from our balcony

View from balcony


Zip-lining Adventure!!!  (Frustrating, but I can't get this picture to rotate!)

On Wednesday we toured around the country and visited a Dominican school as well as a family's home
Drinking Coco-Locos
The gang
Me and my awesome hubby

Tyson’s INR level has been fluctuating a bit in the past few weeks since we got home.  It was a little on the low side when we left for our trip, which is actually ok since at least then we knew Melanie wouldn’t have to deal with nosebleeds on top of everything else.  It was low again when we got back home, so we adjusted his dose, then he caught a stomach bug and his INR level skyrocketed…so now we’re tweaking his dose to get it back to our target range of 2.0 – 2.5. 
Tyson had a cavity filled at Sick Kids at the end of January.  I wasn’t able to stay with him this time since we were also there with Addisyn, who needed sedation, so Brian was with Tyson this time.  Tyson was given nitrous oxide (laughing gas) through a mask over his nose during the dental procedure.  Brian said that Tyson did amazing!  He was so relaxed and didn’t flinch with the freezing needle, and just laid there calmly for the entire filling.  The dentist said it was quite deep but he was able to do a thorough job fixing it because Tyson was such a champ.  We are so proud of him and how far he’s come with respect to the dentist!  Ever since we started seeing a dentist at Sick Kids, Tyson has been much more relaxed about it.  This is probably because Sick Kids still feels like home to him in some ways.  Everyone there is so good with him.  We truly are so blessed to be so close to an amazing hospital.

Tyson being a Champ at the dentist.  (Again, thank-you Blogger for the sideways picture!)

Speaking of Addisyn’s appointment, she had to have an EEG on her brain.  For over a year she’s been having these weird ‘episodes’ where she crosses her legs, holds her breath, bears down, gets red in the face, and sometimes can seem to tune us out completely.  Brian and I think she’s having some sort of pain in her abdominal region, or possibly cramps in her legs, and she’s had several tests (urine sample, blood work, ultrasound) to check her bladder and kidneys but nothing has shown up.  Since Addisyn does this very frequently, and we were able to capture some of her episodes on video, we showed them to both the family Dr and pediatrician.  The family Dr referred her on to the pediatrician, and Dr Murphy wants to rule out seizures as a possibility.  So last week Friday brought back all sorts of horrid memories as I had to deal with sedating a child with chloral hydrate again.  Tyson used to have chloral all the time when he had his echos at Sick Kids, every 2-3 months (or more if he was sick) until he wabout about three years old.  There are few things in life I hate.  I know that hate is a strong word.  But I can tell you two things that I hate:  Coumadin and chloral hydrate.  
Addi sedated during her EEG

When I say to you that my child has to be sedated with chloral hydrate, you probably picture them drinking a medicine and drifting peacefully off to sleep.  Let me tell you that this couldn’t be farther from the truth!!!  They do *not* lie quietly in my arms as I rock them gently to sleep.  NO!  Chloral hydrate turns my children into ravaging monsters!!!  Before they eventually fall asleep, they first feel dizzy and drunk.  They don’t know where they are or how they got there.  They are mad at me because I allowed the nurse to give them this horrible tasting stuff that made them feel like a giant bag of cow dung.  They twist and arch and smack and kick and scream until they’re raw in the throat and I have to squeeze their limbs tight around them so they can’t do any damage…a two year old body gets very heavy when it’s uncontrollably thrashing and twisting about.  Then finally….FINALLY….their body slowly goes limp… and then they kick and scream and cry some more!!!  But eventually, after about 20-30 minutes of fighting, they cannot fight it any longer and they succumb to their drunkenness and cry themselves to sleep.  *sigh*  I’d be happy if I never have to see chloral hydrate again in my life. 
We don’t have results of the EEG yet, but we have an appt with Dr Murphy again on February 11.  We’re hoping and praying for good results and that they didn’t find any seizure-like activity in her brain.  We can take comfort in the fact that all things are in God’s loving hands, and we know that if it does turn out to be something neurological that God will give us what we need in His time. 
Back to Tyson, he’s been doing fairly well.  A few colds, a bit of pneumonia, a few nosebleeds, a lot of sports-induced bruises;  and the LORD willing, not another Sick Kids appointment until May.  
February is Heart Month.  February 14 is Congenital Heart Defect Awareness Day.  Stay tuned for more information on CHD awareness.  Tyson and I met with our mayor last week to witness the signing of the official declaration of CHD Awareness Day.

Oh, and I just realized that I haven’t even posted the link to the Cardiac Kids promotional video that our family took part in back in August.  To see the video, go to the Cardiac Kids website here.

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