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!

Annual Cardiologist Appointment


Brian, Tyson and I headed out at 6:00 this morning for a long day of tests and discussions at Sick Kids.  The day started with the thrombosis team to review Tyson's anti-coagulation and any concerning symptoms or side effects.  We're so thankful that the study drug is having many positive effects for Tyson.  He's growing and gaining weight,  bruising less, having fewer nosebleeds, and we don't have to test his levels as often.  The apixaban also isn't affected by other factors such as illness, diet, plants, or essential oils, while coumadin had limited our oil choices especially when Tyson got sick, because some oils have blood-thinning properties.  Apixaban allows us to use whatever kind of essential oil we want :)
 Next we went to cardiology where Tyson had an echocardiogram, ECG, pulmonary function test, stress test and holter monitor. Tyson's echo looks good and there are no changes from last year.  The mitral valve is still leaky and could cause troubles down the road but so far so good!

We had some time at lunch hour to play in our favorite place in the hospital - Marnie's Lounge!



Good ol' air hockey
Never too cool for a picture with Mickey Mouse

Tyson was such a trooper during his stress test and completed his bike run, biking uphill for 11 minutes in a row without stopping.  He did this while attached to ecg leads and a tube in his mouth, both to monitor his heart rate and function. He was quite exhausted when he was done and the cardiac nurses assisting were VERY impressed that he was able to complete the whole test!  We're happy with the results and so is Tyson!


Dr McCrindle said Tyson did better than the average Fontan kid!! You can't get much better of an answer than that!

I have to share with you a couple of things we're really excited about!

Firstly, it's possible that once the apixaban study is over, the sponsor company might be able to supply Tyson with apixaban for the duration of time while we wait for the FDA and Health Canada to approve apixaban in children.  This is exciting because with all of the positive results we've seen so far, we do NOT want to have to go back on coumadin again.  UGH I can't EVEN!!!

Second, Brian and I are going to be participating in a study at Sick Kids in January. It is a "whole genome sequencing study" to see if there is a relationship between congenital heart defects and parents' genetic makeup. Brian, Tyson and I will all be having an echocardiogram and bloodwork done so they pick apart our genomes looking for any genetic predisposition to any particular heart defects.  The flip side of this study is that it could potentially detect other illnesses we may possibly be predisposed to (breast cancer, etc.) and we're going to have to decide if this is something we desire to have them disclose to us.  Regardless of what we decide about the disclosure, we're always honoured to help with research in any way we can to help our cardiac communities at large.

Tyson signing the consent forms for the genome study

And lastly, I'm REALLY excited about something else I'll be busy with over the next while. Dr McCrindle and some other practitioners at SickKids are spearheading a new Fontan Registry Database to bring together heart centers and pull together Fontan research across the world.  They currently have no Fontan database and this makes it very difficult if they ever want to do any research on post-Fontan challenges, medications, symptoms, or even ways they can improve on their practices, etc. For example, right now Sick Kids is one of the few hospitals that does fenestrated Fontans where other hospitals perform non-fenestrated.  There is currently no concrete research proving one way or the other which method is superior.  This database of information would help cardiologists across the globe make educated decisions based on past experiences and research.

This is SO exciting, but do you know what is even MORE exciting? Dr McCrindle asked me to sit on the Parent Advisory Committee for this research database!! My role is not 100% clear as of yet as the registry is still in the works, but the committee would serve as an advocate for other heart families who want to express their concerns or pose questions about post-Fontan research.  What an honour to be able to serve the cardiac community in this way!  And you bet, I said Yes!

It was a long day today, I think the longest one yet!  Leaving just before 6am and because traffic was a gong show and it took us AN HOUR to get to the Lakeshore from Sick Kids, we didn't get home until 8:15pm :(  Sooooo tiring!

So we'll be back at Sick Kids in January for the genome sequencing study and finalizing details about the apixaban study.  Then again in May for a kidney ultrasound and appointment with the nephrologist.  We'll keep you posted as time moves on.

Thanks for checking in!
Melissa :)



Relief after a Visit to Dr Murphy


This morning I took Tyson for his follow-up appt with Dr. Murphy, the pediatrician that first diagnosed Tyson's heart defects when he was just 8 days old.  Right before the appointment, Tyson had a normal BM with no signs of blood, so that is SUPER reassuring! (Yup! More poop talk!)
 
Dr. Murphy reviewed the test results with us and although he wasn't concerned at all about the campylobacter they found (which can also cause bloody stools,)  he was mostly concerned about the particular strain of e-coli that Tyson had contracted.  Apparently this particular strain likes to attack the kidneys (which explains why the ER Dr said we could go home as long as Tyson promised to drink 2 litres of water per day to flush out the toxins.)  Dr. Murphy also said that they won't prescribe antibiotics for this type of infection because the abx can often break down the bacteria, causing even more toxins to be released and that would definitely make his symptoms much worse.  So we're thankful that the water he's been drinking (with lemon oil of course ;) ) has been working to flush out the toxins from his body.
 
Dr. Murphy said that Tyson is clear to go to school again on Monday.  I knew he'd be ready for school by next week but the question is: can he safely be around other children when he is just recovering from an e-coli infection?!?! When I asked the Dr about the musical productions this weekend and if Tyson is clear to go, he said there's no reason to think he can't go since he had a normal BM this morning and it appears that the infection has worked its way out. WOHOO!  Tyson was SO happy about that!  They've all worked so hard to prepare for this musical and I too would be so sad for him if he had to miss out.
 
Moving forward, I expect a call from the thrombosis team today and if they don't call soon, I'll definitely be calling them to see about getting him back on his blood  thinner.  We continue to make sure he drinks plenty of fluids, and look out for any signs of dehydration or kidney failure like urinary retention, dark urine, etc. We'll also start him on super duper probiotics to restore his gut flora to good health.
 
That's the update for today.  All in all, we are thankful.  We're thankful for our local doctors as well as the various SickKids' team of doctors. We're thankful for our essential oils to help us clear infections and get us through stressful times.  We're thankful for the love and prayers from our family and friends.  But most of all, we're thankful for the peace that surpasses all understanding.

"Rejoice in the Lord always.  I will say it again: Rejoice!  Let your gentleness be evident to all.  The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4: 4 - 7

Hanging on our dining room wall, these words carry us through EVERY time.
<3 all="" an="" and="" are="" basis="" been="" care="" could="" essential="" experts="" family="" for="" friends.="" from="" get="" god="" have="" infections="" local="" love="" most="" much="" nbsp="" of="" oils="" on-going="" on="" our="" p="" peace="" prayers="" re="" receive="" s="" sickkids="" so="" stressful="" surpasses="" team="" teams.="" thankful="" the="" this="" through="" times.="" to="" tyson="" understanding.="" us="" various="" we="" which="" worse="">

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.