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!

HAPPY FONTAN-IVERSARY TYSON!!

Today we celebrate six years since Tyson's last open heart surgery!!!  

HAPPY FONTAN-IVERSARY TYSON!!  


 Check out Tyson's new Sick Kids t-shirt!!   


This is what BRAVE looks like!

The cardiac clinic at Sick Kids has a program called Bravery Beads.  For every ECHO, ECG, chest x-ray, blood work, surgery, heart cath, IV stick, intubation/extubation, hospital admission, emergency event, etc. etc. etc. etc. we are given a bravery bead.  We actually weren't even aware of this program until AFTER Tyson's third open-heart surgery, at which point it was too overwhelming to even think about how many beads he could have had up until that point!
However, with the incredible details I've kept on this blog over the years, I spent several hours last week (and got a VERY stiff neck) re-reading ALL of my blog posts from the past 8 years so we could come up with an estimate of how many bravery beads Tyson should have received.  I'm sure I've missed some, since in the beginning I didn't blog about every single clinic appointment, chest x-ray, or visit to the lab for blood work.  But this is a very good representation of what he has been through in the past 8 years.  He LOVES his bravery beads and is very proud of them!  I'm so glad we were able to do Tyson justice and spent the time blogging, reading, recording, and collecting the beads that he deserves.  


The strands in his right hand are from ages 0-3 and the strand in his left hand is from ages 4-8.  With his frequent hospital admissions because of pneumonia, he still has waaaaay too many bravery beads for ages 4-8 but we anticipate that the amount of beads he gets from now on will decrease with passing time.
Blood work - 73

Clinic appointments at Sick Kids - 46

IV starts - 33
Intubation/Extubation - 22






 I was thinking later that he should have more for intubation/extubation because for every cath and MRI he was also intubated and I didn't remember to count those 

Test & Scans - 127
 
This is the check list I used to record his procedures

Last week we went to Sick Kids for Tyson's regular ECHO, ECG, cardiologist appointment and also an appointment with the Thrombosis team.  He also went for some blood work to check liver enzymes, albumin levels, etc and to calibrate his CoaguChek machine. 
It was such a long day!!  We didn't get home till 8pm because it was a full day of appointments and of course traffic is just so horrible. So we were all pretty exhausted by the time we got home.  BUT we got the BEST news ever!
I've been waiting six post-Fontan years to hear Dr. McCrindle say this and last week he finally he said it.  "See you in a year."

SEE YOU IN A YEAR!!!!

We are so thankful for the stability in Tyson's life right now.  His heart is holding up, his respiratory concerns are quickly disappearing thanks to our amazing essential oils (not a single cold since March 2016!)  his moods are more manageable, his overall progress in life is astounding - and we owe all our thanks and praise to GOD THE FATHER!

We do have to return to Sick Kids for other annual appointments, like renal ultrasounds & nephrology (kidney specialist) the thrombosis team sees him once per year, he has bone density scans every two years,  and Dr. McCrindle wants us to keep seeing the Sick Kids dental team twice a year because his blood thinner complicates things and Sick Kids has cardiac anesthetists if he ever needed dental work done.  As much as it's not great fun to have to drive all the way to Sick Kids just for dental cleanings, if Dr. McCrindle is more comfortable with that, than so are we.  And Tyson certainly enjoys Sick Kids' dentists much more than our local dentist too. 

We're so thankful for good news!





ECHO/ECG/ Cardiologist Appointment

Tyson went for his semi-annual ECHO, ECG and cardiologist appointment at Sick Kids his week and things are looking well.  The ECHO revealed no new changes to his condition - all the same issues are still there, but no new concerns have arisen.  We are thankful for no news!!

Dr McCrindle was very brief with us this time because he was clearly frustrated with the new computer system that was just implemented at Sick Kids.  I thought it was quite funny that he didn't even know how to copy and paste using "Ctrl V" but was so used to using the mouse for it (and I admit, I like that method better too) but he was so upset he called the IT guy in to 'fix' his mouse because it wasn't allowing him to copy and paste.  I was able to solve the problem for him and if you know Dr McCrindle, he gave me that little smirk and said, "Clearly you should be doing my job."

 Seriously.  EVERY time we come we HAVE to go see  Mickey. 
My Sick Kids friends will all get that, right? 


 Tyson having his ECHO done - watching tv. 






Tyson met a new friend named Kain.  Kain's Mom and I have known
each other for a while but this is the first time the boys have met. 
Kain had a sedate ECHO done today..... I don't miss those days :/  


Being cheeky when I asked him to smile for the picture.

Tyson also had to have a 24 hour holter monitor again.  Dr McCrindle wants him to have one done yearly now because a lot of post-Fontan kids develop arrhythmia issues over time.  Once he got past the itchies, he got used to it.  Although I don't think it's going to give a very good indication of Tyson's normal heart rates based on normal activities, because we chose the hottest 2 days of the summer to have the monitor on him.  He honestly sat and played board games inside or looked at book, and on Thursday afternoon I let them watch a movie because it was too hot to be outside.  The humidity is not very good for Tyson's heart so I'd rather he stay cool and hydrated inside on days like that.  

Dr McCrindle also informed me that he wants Tyson to have blood work regularly now too.  Another long-term complication of the Fontan is PLE (protein losing enteropathy - google it) and liver issues.  So they want to keep an eye on liver enzymes and albumin levels and such.  

The next appointment is in 6 months again.  Between now and then we'll be back at Sick Kids at least twice.  Once in August for a dental cleaning, and again in September for a nephrology appointment and ultrasound to monitor the cyst on his right kidney.

Tyson has a busy summer planned!  We start swimming lessons next week, every morning for 2 weeks at the outdoor pool in Shelburne.  Then at the end of July we're spending a week up at Grundy Lake to do some camping, fishing, canoeing, etc.  In August Tyson and Kenya will be heading off to Campfire! Summer Bible Camp for the week and I am just as excited as they are!  Since Tyson can't go off to camp without a cardiac nurse (or me) present, I am volunteering as a cook in the kitchen for that whole week!  That way I can be far enough away from him that he can have the whole 'camp experience,' but close enough in case anything serious happens.  It should be fun!

That's the update for today.  Thanks for checking in!

My New Passion & Calling



A little over a year ago, my first box of dōTERRA essential oils arrived at my doorstep. If only I could have known how these oils would change my health and the health of our family, I surely would have purchased more than the smallest kit – the Family Physician kit!!
The impact that these oils had on our family was so significant that within a few months of using the oils, I started sharing and teaching others so that they too could be empowered and experience the purity and potency of these oils. I went from teaching my first class in March 2015 to becoming a Silver-ranked leader in the company within 9 months, all because of the pure amazing-ness of these little oils. 

I’ve always wondered what God saw in me that He would give me the special title of "Heart Mom" but it is because of this journey, that I am now known as the ”Essential Heart Mom.” People have said to me, “I don’t know how you do this business with five children, and with all you have going on with Tyson.” Are you kidding me?!? It is BECAUSE of Tyson that I have found a new calling; it is BECAUSE of our journey with him that I am able to give you a powerful testimony of what these oils can do. It is my passion to help other families NOT have to go through what we went through with Tyson. 


In the past year, I've had the privilege of not only empowering other women to take care of themselves and their families better, but I've also been able to contribute to our family's income significantly by empowering other women to do exactly what I've done.
If you've been searching for something different or wondering how you can make a difference in others people’s lives, then the time is NOW. With dōTERRA launching into Canada in June, the essential oil industry is going to absolutely explode in Canada! Who wants to join me in an essential oil revolution? 


Please see below for details and email me at melissakottelenberg@gmail.com if you want to partner with me in an essential oil revolution. 


*Must not already have an active wholesale account with doTERRA
*Must be willing to spend $100/ month on doTERRA product (trust me, this is the best thing you'll ever invest in for yourself and your family. It took me only TWO months to cover the cost of my oils and now I am also able to bless others by giving away free stuff!)
*Must be willing to commit a minimum of 10 hours per week to your doTERRA business.

A Narrow Escape

If you remember from one of my last posts, Tyson has been hospital-free for over a year - 14 months now actually!  So far 14 months is his record - the longest amount of time that he's been admission-free!  Well yesterday we had to bring him to emerg to get some IV antibiotics and oxygen.... BUT we were able to escape admission this time...very narrowly!!!!  So we can continue counting the months without a hospital admission! 

Tyson actually had a very healthy winter!  A few minor throat things and a few head colds but we were able to avoid antibiotics altogether for all of these things because we try to use a more natural approach as much as we can.
When we came home from Florida in March Break, Tyson was sick with what we're pretty sure was pneumonia.  We actually ended our holiday two days earlier than we had planned because his cough was sounding worse, his temperature was slowly rising and his O2 sats were slowly decling. So we boogied home as fast as we could (24 hour boogie!!  lol) and got him hooked back up to his ventolin nebulizer to open up his airways (Of course we didn't pack it along because he hadn't needed it in over a year!)  Once he was getting regular ventolin doses again and we made some suppositories out of coconut oil and essential oils, within a matter of hours he started to make good improvement.  It was a bit of a trying time because an ice storm also hit southern Ontario on Easter weekend so we had to improvise with the generator to keep his nebulizer running, but we were satisfied with his slow and steady improvements.  Merrick and I both had a bad cough in late February/early March that took us a full week before we started feeling better, and we both coughed for a couple of weeks afterwards, so if Tyson had this same virus we knew it was going to take him twice as long before he would start to feel better.  Just using the oils on the bottoms of his feet didn't seem to be quite enough for him but the suppositories really made a huge difference!  His O2 sats were a little lower than his normal, but certainly not in the 'scary' zone.  Obviously if that was the case we would have brought him to see a doctor right away.  We had seen such huge improvements once we started the suppositories so we continued on with this process until he got better.  (The theory behind suppositories is that this route of administration bypasses the liver, so medications and oils are able to go straight to the lungs and heart - where Tyson needs it most.) 
Once he was feeling better and his cough was cleared up, we sent him back to school.  He attended school on Tuesday, Wednesday and Thursday... but on Thursday afternoon he came home burning up with a fever!!!  Oh brother, here we go again.  Why did we send him back to school before he was 100% better, catching another virus while his defenses were down?  So we decided this time we were going to keep him home from everything - church, school, everything - for as long as it took till he was absolutely 100% better.  There was no way we wanted to take another chance at him coming home with another bug.  There was this random 'high fever bug' that was going around the school so we figured that's probably what he had.   We just kept him home, let him rest, kept him quiet so his sats would stay stable, gave him Advil and Tylenol for the fever, and started the essential oil suppositories again since they worked so well the first time (or so we thought...)  He was doing fine with the oils and we were still giving him puffers because he was being weaned from his last cold.  But all weekend his energy levels were just 'off.'  When I talked to his teacher about how he was at school that week, she said he was doing all his work fine but he was not his bubbly, cheerful, happy self. Hmmmm....then we start to wonder.....is this is a continuation of the same bug that never fully went away?.....or is this the start of something new?.....  There's really no way to know for sure but he wasn't really coughing any more, so we thought it was likely something new.

During the weekend and leading into the next week, he was never really acting 'sick sick' but he was definitely not himself.  All kinds of things go through a Heart Mom's head when your son is not acting himself but doesn't seem seriously ill.  Is this the start of heart failure?  Considering how long it took Merrick and I to get better, we decided he probably just needed more time to feel 100% better again.  No biggie.
Then on Tuesday or Wednesday of this past week he started coughing again.  *SIGH*  Nothing serious at first, but once the cough changed from that dry tickle-cough to the wet, juicy cough, we knew it was time to bring him in.  There's just only so much fighting a cardiac kid can take.  If this was pneumonia again, then maybe it never fully went away the first time and we decided that enough was enough, he's been walking on the edge of sick for long enough. 

So on Friday I brought Tyson to see his family doctor.   After listening to his lungs and checking his O2sats, it was decided he needed to go to the hospital to have a chest xray to see if it was pneumonia.  At home, when we kept him quiet, his sats were fine (84-87) but if he walked around to much or climbed up a flight of stairs, they would plummet for a while and then eventually come back up. 
So of course his O2 sats are low after walking from the van to the emergency room triage....and so when the O2 monitor showed 79-80 he was immediately started on oxygen to give him some support.  The ER Dr ordered x-rays which confirmed left-sided pneumonia (that rotten left lung!!) and elevated white blood cells. So an IV was started so he could get some medication to treat it. Anytime Tyson need IV antibiotics and oxygen, we know he's being admitted.  I had also packed an overnight bag because we knew this could be the case.

So we waited in ER for a while, waiting for a room to clear up for him in pediatrics.  A few hours later, it was time for another ventolin mask.  Whenever Tyson has the O2 nasal prongs in, he *HAAATES* having the ventolin mask over top of his face.  The ventolin mask pushes against his face and the nasal prongs get shoved into his nose even farther and it drives him *CRAAAZY*  He goes from a content kid waiting patiently for 'his room' in the hospital to absolutely FLIPPING out!!!  So they decided to turn the O2 off since the ventolin mask is run by oxygen anyway.  After his ventolin mask, his sats started to climb, and of course sitting quietly in a hospital bed for a few hours playing games on my phone helped his levels stabilize too!  So they kept his O2 off because he was satting 85-88.

The ER was PACKED!!  Doctors and nurses were running around like crazy trying to keep up, and the whole hospital was gridlocked.   There were absolutely no beds available for Tyson at all...nobody was moving out of the ER and being admitted into rooms because the whole hospital was full, which meant that nobody else could move into the ER either.  I felt so bad for those poor people waiting in emerg for hours and hours, but yet so thankful that they take Tyson's condition seriously and he always gets seen right away. (When a Heart Mom sees O2 sats of 78 at triage she thinks, "Hmmm...that's not so great."  When an ER nurse sees sats of 78 they kinda freak out a little and rush for the oxygen tank ;)  

Anyway, Tyson really did need to be admitted but because he was able to be weaned off the oxygen, and because the hospital had absolutely no beds for him, Dr Murphy let Tyson go home with the IV.  It was either that or be admitted to the ER and try to sleep in that crazy busy emergency room.  Ummmm no thanks!!  We were given a choice and we chose to go home and come back every 8 hours for his med doses.  It meant we had to go back to the hospital for 11pm Friday for his next dose and then again early Saturday morning. 

This is Tyson playing on electronics as he gets his late-night dose.   I am SO thankful for electronics....they sure do have their time and place in our lives! 



Braden came along to keep us both company, and to keep me alert on the late-night drive.  It was an exhausting day.  A lot of waiting, testing, answering questions, and recalling little details.  As a Heart Mom, I am *very* in tune to any changes in Tyson's symptoms or behaviour, and I could tell you when his cough changed from that normal cough sound to the junky pneumonia sound, and I could tell you when he last peed, and everything he had to eat that day, and how many fluid ounces he had to drink.  I could even tell you by looking at his lips what his O2 sats are.  I'm serious.  I am usually within 2% every time I guess.  But sometimes being a Heart Mom, there's so much in my head I think my brain could explode.  I'm so thankful that this is over and we can move on and get Tyson well.


This Doctor is so very special to us.  Not only did God's Providence allow him to be in the right place at the right time 7 1/2 years ago when Tyson came in to Headwaters ER as a very lethargic baby, but Dr Murphy just always seems to be there when we need him.  This morning, he was on rounds with other patients and when he saw Tyson and I waiting in triage to be registered for his morning dose, he snuck in a quick listen to Tyson right there in the triage waiting room.


Ok kind of a blurry picture, but I want you to see how brave my son is.  He is SUCH a champ!  He didn't even cry when they had to poke him  yesterday to get blood cultures and an INR level, and he didn't even cry when the nurse inserted his IV yesterday.  He had to get out of his warm and cozy bed at 10:00 pm so we could get him meds, and not crawl back in again till 12:30 am and he didn't complain once.  He knows what the alternative was.  I am so proud of this brave young lad!  He is my HERO!!

Tyson has since been approved for home care so we had a nurse come in this afternoon to set up an IV pump which will automatically diffuse the medications at the proper dosage times.  (Haha, I mean 'infuse' not diffuse....EO slip-up)
It will slowly infuse his meds at the proper times and in between times it gives a slow constant drip to keep his line open. I am so thankful for this option for Tyson!!


This is the IV pump & bag he has to carry around for the next 48 hours.  He wasn't too impressed with it at first but he will adjust.  It's only a little bigger than the holter monitor 'purse' he has to do yearly.  And hey, he gets to play Xbox at home - he can't do that at the hospital!

Home care is coming in again tomorrow between 11am-4pm to change the meds again since this IV bag only holds 3 doses.  Hopefully after that he is good to go! 

And so now, a prayer request if you don't mind.  Please pray that the IV antibiotics will do the trick and he will improve quickly so that he won't have to be admitted.  He also has 2 different oral antibiotics to follow-up with after the IV dose is done.  I don't love packing his body with all kinds of synthetic medications with side effects and such, and the overload it does on his liver concerns me, but I know that this is what he needed this time.  (I'm pretty sure all the oregano we've been giving him over the past 3 weeks has done a number on his liver too. lol!) 

Happy CHD Day!

Happy CHD Day everyone!
It was a little more challenging this morning to find 'church clothes' for everyone, but we did it!


Click on the link below for an article on how local Heart Moms are raising awareness for the world's #1 birth defect:  Congenital Heart Defects

http://shelburnefreepress.ca/?p=16835







One Year Hospital - Free!

As a Heart family, we celebrate the little things in life. The little things can be the BIG things too.