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 nine 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!

An Unexpected Visit to SickKids


Yesterday (Tuesday) we took Tyson to SickKids' emerg due to complications after a wicked gastrointestinal infection. He caught a bug over the weekend, which started with a headache on Friday and Saturday, then some abdominal pain on Saturday night and by Monday night he was pooping blood   Sorry for the gory details, I don’t really know a nice way of saying that!  Once we noticed the blood late Monday night, Brian and I had our age-old debate:  do we bring him to ER late at night and lose an entire night of sleep in the ER? or try to get some rest at home and bring him in the morning?  I absolutely loathe these kinds of decisions.  It’s not the same as deciding what to do when one of our heart-healthy kids is sick….it’s slightly more complicated with Tyson.  On one hand, being a cardiac kid he needs his sleep so badly.  On the other hand, one wrong decision and we could live with a lifetime of regrets.  After prayer and deliberation, we decided to try and get some sleep, and that he should sleep in bed with me where I could keep a close eye on him.  Brian was banished to the basement 😉 as he traded beds with Tyson.  

Overnight was not fun as the poor guy was in the bathroom 8-10 times or more and was experiencing bad abdominal pain.  He did sleep for an hour or so at a time before he tossed and turned and the next round started.  Needless to say, I had a lot of time to pray and plan what to do.  Because he’s on a blood thinner, things can get very complicated when he gets sick and because it’s a study drug, we decided to take him straight to SickKids where we could connect with his thrombosis team and cardiac team.  My Mom came with me and we were in and out of there fairly quickly, within about 4 or 5 hours.  I’m still amazed every time at the wonderful care we receive there.  Every single person who works there really enjoys their job and they do everything they can to make Tyson comfortable and at ease.  Thankfully, Tyson wasn’t admitted and we got to go home.  They had put in an IV 'just in case' but then decided he was stable enough to go home because he wasn’t dehydrated at all and his pain was starting to subside.  

We have to watch him closely over the next few days and if the bleeding doesn't stop, abdominal pain worsens, or if he shows signs of dehydration, we have to go back right away. He’s also been off his blood thinner for a few days now because of the bleeding, so that's a little freaky too 😫   There is peace of mind, when he’s on the medication, that he isn’t likely to have a stroke.  But now that he’s been off the med since Monday, he’s at risk…..  I hate that.  

On Wednesday the ER Dr called and informed me that Tyson's sample came back positive for 2 bacteria: e-coli and campylobacter. The most common way to catch e-coli is through food/water contamination or person-to-person contact, so he really could have picked this up anywhere.  We are continuing to use oregano and tea tree to try and combat the bacteria, but if it doesn’t clear completely, I’m fairly certain he’ll be prescribed antibiotics.  The ER Dr said they try to only prescribe antibiotics in severe cases.  I’d say Tyson’s case was fairly severe, he sure had a lot of pain and no one else saw the amount of blood that I saw!  But because he was already going less often on Tuesday, I was comfortable with the decision too.  He only had 1 bm today and while it did still contain blood, it wasn’t as much as before and he’s only complaining that his tummy is ‘crampy.’  I’m happy with the progress he’s making and we’ll see Dr. Murphy for follow-up on Friday morning.  I am praying that I don’t see anymore blood because Tyson is really excited to be performing in a musical with his school Friday night and Saturday.  We will see what Dr. Murphy has to say.

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