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!

A Year of Blessings

Reflecting on this past year, we can be so thankful for Tyson having good health!  He was able to stay healthy enough for Brian and I to go away together in January, then he had a really healthy February and March - with all the cold temperatures he stayed cold-free for two months!  Then after a rough spring with two rounds of oral antibiotics and missing a lot of school, Tyson did need a short stay at Headwaters hospital in May/June because of pneumonia again. Other than a few scary nosebleeds, he stayed really healthy all summer long and our family enjoyed some camping together and then Tyson started school full-time in Grade One. 

He's even gotten over a few colds since cold & flu season started, including this most recent one which actually spread into his lungs and caused quite a lot of coughing and wheezing.  He managed to overcome it though - with the use of regular chest physio & deep breathing exercises and regular ventolin masks; AND with the help of the new oils we've invested in, he was able to stay away from antibiotics altogether! I'm so excited that the oils were able to keep him from getting sicker and prevented the pneumonia from causing a drop in his oxygen levels.  Usually that is what causes Tyson to need hospitalization, because his O2 sats are already lower than normal and his cardiologist wants him on oxygen if they drop below 80.  With this past cold, he never dropped below 83 even while in a deep sleep.  His energy levels did decrease a bit because he wasn't able to be too active without having a coughing spell.  Once I started using the oils though, he stabilized and didn't get any worse!  I'm so thankful for the chest rub made by doTerra.  I know it kept him from needing the antibiotics.  I still can't fully believe it myself, but the proof will be in what happens the next time he gets sick.  Oh boy, I can't even begin to imagine how happy we'll all be if Tyson can remain hospital-free because of these wonderful oils!!!  Is it too much to want him to remain antibiotic-free this winter too?!?  I can't even imagine what that would be like for him! 

Yesterday Tyson was still coughing with activity but he was still able to enjoy skating at the arena.  His endurance wasn't as good, but he still had a very good time!  Then we went to my parents' house for Santa Claus and he was in pretty good spirits again.  Today he only needed physio and ventolin masks twice. I'm so glad he's better and we can get back into a more manageable routine with him.  It was exhausting doing all that physio and oiling and flu bombing BUT it was SOOOO worth it!  It has been helpful that the kids are home from school, because Braden and Merrick usually each took one turn with physio during the day.  I think our biceps are growing with all that physio :)

So our year in review is a really good review!  Once again we see God's hand in Tyson's life and in all our lives.  He has protected Tyson from serious harm and has spared him from needing any further surgeries again this year.  When Tyson was a baby, he had open-heart surgery in 2008, 2009, and 2010.  Now it's been 2011, 2012, 2013, 2014 - FOUR years since his last open heart surgery! Four full years without needing surgery.  God is so good and we're so thankful for the 'break.'

Upcoming things for 2015 is another MRI in April to assess the small pulmonary veins and get another measurement on his heart's ejection fracture.  Then his regular ECHO & cardiologist appointment in May to discuss the MRI's findings and what (if anything) needs to be done.  We pray that Tyson's heart remains stable and doesn't decrease in function, and that the pulmonary vein stenosis does not progress.

I'd like to draw your attention to another blog for which I'm honoured to write.  I love blogging on here because it's a good way to keep track of everything going on in Tyson's life.   Many times I look back at what Tyson endured in the first few years and I think to myself, "Did that really happen?"  I love reading back what I wrote and how God has molded and shaped our family to what He wants us to be.
I'm sure you all know how Cardiac Kids is very near and dear to us, since they provide us with wonderful opportunities for our family to go out and have fun.  Do you remember the video we took part in?  If not, you can view it here at the Cardiac Kids website.   Make sure you visit the site and have a look around, there are a few familiar Kottelenberg faces on there!

Well the blog I've been writing for is also organized by Cardiac Kids, with the intention to raise awareness of CHD, provide information, and help other families in the same situation. I was asked to be a regular contributor to the blog and of course I said 'yes!'

My most recent submission was How To Be A Friend To A Heart Mom

I've also written Tyson's Story  and Being A Heart Family.

So if you have time, check it out!



Wishing you all a wonderful holiday season 
and God's blessings for 2015! 




Slow & Steady Wins the Race?!?

We had to dust Tyson's nebulizer off and start it up again last week.  He's been doing really well since school started in September and has overcome two colds with his puffers, flu bombs, and lots of physio.  But the cold that Tyson has now is deep in his chest and the puffers just weren't cutting it anymore.


It started two weeks ago today as a slight sniffle, then a few days later a little cough.  We were giving him peppermint oil in his aerochamber instead of ventolin, in an effort to try some more natural methods.  Ventolin increases his heart rate and makes him hyper, so if his airways can stay open inhaling pure peppermint oil from doTerra, then we want to use that instead.  It worked for about the first week, but once he started wheezing more and his cough changed to more of a wet lung sound, we knew that the natural methods weren't going to be quite enough because he was likely developing pneumonia again. It's great to use natural methods when we can, but often time is of the essence with Mr. T. 

Once the cough changed from the upper respiratory cold to the 'wet lung' cough (there's a difference in how it sounds...it's hard to explain if you've never had a child with pneumonia....but we've been down this road so many times that we now know the difference in how the cough sounds.)  Brian and I both noticed a change in the sound of his cough last Wednesday night at the dinner table...he coughed....Brian and I looked at each other...and frowned.... Tyson was still acting perfectly normal and he certainly wasn't lacking in energy at all, so we hoped he could make it to school two more days before needing a break to rest over the holidays.  We then started using his ventolin puffer in addition to the peppermint oil.  Maybe that would work better?

When he came home from school on Thursday, he was grumpy and run-down.  His cough was definitely worse so we knew it was time to push the peppermint aside and turn to his tried-and-true ventolin masks.  It's hard to have to get the nebulizer out after so many months of not using it, but we are very thankful that God has given Tyson good health from June - December and not needing ventolin masks or antibiotics since then!

I also went to a workshop about doTerra essential oils on Thursday night where I was able to buy some chest rub.   I started using the chest rub as soon as I got home on Thursday night and from the sounds of his cough we decided to leave Tyson home from school on Friday so that he could get the attention that he needed.  Even though after dinner he was again acting fine and had good energy he just can't get in enough ventolin masks or chest physio when he's at school all day.  Also, in order for the oils to do their job they have to be used several times a day and not just morning and night.  If we want results, we had to leave Tyson home and do the protocol with him several times. 

The chest rub is made with doTerra's essential oils mixed with coconut oil.  I'm not sure of the exact recipe but I know there are some key ingredients in there that promote a healthy respiratory system and open up airways like Cardamom, Rosemary, Peppermint and doTerra's respiratory blend called "Breathe."   I also use what we call a 'flu bomb' which contains oils that fight infections like Melaleuca, Lemon, Oregano, and doTerra's protective blend called 'On Guard' which we rub on Tyson's feet several times a day.   We also use this with our other kids at the onset of an illness and it usually heals them very quickly.  It doesn't really give the virus a chance to run its course; it kinda just attacks the bug before it can even get started on anything!

We've been using 'Breathe' and 'On Guard' in Tyson's oil diffuser every night since last year sometime and it's only recently (November) that we invested in some more of doTerra's essential oils in an effort to prevent Tyson from being on antibiotics all winter long. 

This is our new 'medicine cabinet.'


So we kept him home from school on Friday, and I used the chest rub on Tyson's chest & back every hour for all of Friday and Saturday, in addition to his ventolin masks and chest physio every 4 hours.  I also made a Dr appointment for him (after talking to my smart, think-ahead mother - thanks Mom!) to see if we should have a round of antibiotics on 'stand-by' just in case the oils don't work for him.  I really, really want to give the oils a chance to fight this infection, but I also didn't want to end up in emerg with him on the weekend!  The Dr didn't specifically hear pneumonia when he listened to his lungs but he said, "I've been wrong about Tyson before and you've been right.  So I believe you when you say you think he has pneumonia." Hehehe.... He said that with a healthy child he likely wouldn't prescribe the antibiotics but with Tyson's history of pneumonia, he didn't want to risk it so he wrote a script up.  I talked to him about the idea of not filling it right away and waiting to see if the oils would heal him.  He seemed skeptical that it would work, but we are going to hang in there and keep up with it until we know for sure it's NOT working.

So we have the antibiotics if needed but so far Tyson is remaining STABLE.  He is definitely not getting worse, that's for sure, but is he getting better? - that's the question. It's hard to say.  There's still a lot of junk in his lungs which he is trying to expel with lots of chest physio and getting rid of anything that he coughs up, but his O2 sats are stable at 84-90. 

This weekend has been busy with all the oil rubbing, flu bombing, chest physio, and ventolin masks....but so far he's not sick enough to need the antibiotics.  I have heard of so many success stories from people whose kids have struggled with pneumonia and now that they use the oils, they no longer need antibiotics anymore.  I want this for Tyson so badly!  But I also know that with him, there is a very fine line between healthy and sick.  One day he seems ok and the next day he needs to be hospitalized.  So we are watching him very closely and doing what we can to get him healthy.   If his sats start to drop or he spikes a fever or starts to lose his energy, then he *will* need the antibiotics and we will give it to him.  We figure that if the oils work, and they can prevent him from needing antibiotics even once or twice every winter, then it is so worth it!

And I can tell you another thing: if these oils work and can heal Tyson of pneumonia, I will be shouting about doTerra from the rooftops, telling it to anyone and everyone who will listen to me!!!  If this works, we will be SO happy!  We recognize that it is all in God's hands and we are praying that the oils will produce good results for Tyson.




Tyson is Six !

I realize that it's been over a month since our last update, but honestly I have no idea where November went!?!?! And now here we are, well into December and Christmas is only two weeks away.

Since our last update, Tyson has celebrated another birthday, gone for his semi-annual ECHO and cardiology appointment, endured a 24 hour holter monitor test, received his first term report card, and enjoyed his first snow day from school.

Overall his health has been so good this past fall and beginnings of winter season.  He just started with a cold this week but so far his symptoms are as mild/normal as all the other kids in the house.  His nebulizer mask has been collecting dust on my dresser since June and we pray that we can keep it that way.  Tyson has had two small colds since school started in September and was able to get over both colds without using his nebulizer; just regular puffers and lots of lung physiotherapy and deep breathing exercises!  We are all so excited that he could overcome both colds without developing pneumonia and without needing to take antibiotics!


Tyson enjoyed a nice birthday party with his friends in November.  The following day was a PD Day so he could have a later night and sleep in the next day.  He's still in bed early to allow him enough sleep to function and stay healthy.


A few pictures from his birthday party....

The Grade One boys


One of his friends wasn't well enough to come the day of his party, so he joined us the following Sunday for lunch.

HAPPY 6TH BIRTHDAY TO OUR HEART WARRIOR!

 Tyson also had an excellent report card from Grade One and appears to be doing excellent in school, with no learning difficulties so far.  Even in the area of social development, he has matured so much since Kindergarten last year and is functioning very well in the classroom setting.  He even got an A in Phys. Ed!

A few things have changed in our medication and supplement regimen this fall besides the essential oils we started last year.  I took Tyson to see Linda Kennedy, an iridologist and herbalist in our area.  She could see just by looking into Tyson's eyes that he had a heart condition, lung condition, and that something was 'off' with his blood.  (Would you believe that I didn't tell her a thing about why I brought Tyson to see her, and didn't give her any hints as to his heart condition or respiratory problems - just to see if she could tell me...) It was a pretty cool experience and she was able to make some recommendations to improve Tyson's respiratory health.  We began a new herb called Mullein, a natural 'expectorant' taken in capsule form to help fight respiratory problems.  It relives congestion and is also used by some as a natural diuretic.  This would also help Tyson keep fluid out of his lungs and hopefully prevent pneumonia.  We are seeing a huge improvement in his lung health this year.  We're not certain if it's the Mullein or the daily lung physio, but either way he is healthy and we are happy so we will continue with both. 

We also diffuse a protective and respiratory oil blend in his diffuser every night, run the humidifier to prevent nosebleeds (so far only one this season...) rub oils on his feet when he's coughing, he takes his daily Mullein and other asthma meds, and puffers if needed.  I've even been so brave as to try peppermint oil inside his aerochamber instead of ventolin puffs.  If you've ever inhaled 100% pure peppermint oil from doTerra, you know how well it opens up the lungs.  So far he is doing well on it and I like that fact that it won't cause the rapid heart rate that ventolin causes.

Speaking of heart rate, we mentioned the lower heart rate to his cardiologist a few days after his pediatrician appointment.  The cardiologist ordered a holter monitor for Tyson to wear for 24 hours to record the electrical activity of his heart.  We needed to find out if Tyson's fatigue in October/November was due to rhythm issues within his heart, or just the adjustment of going to full-time school.  So the holter was ordered for after his ECHO and cardiologist appointment for November 12.
All hooked up to the holter monitor
  The holter test went ok.  Tyson had to go to school wearing it and he was pretty itchy form the tape and mesh undershirt he had to wear, but we managed to slip one of his cotton undershirts on underneath to relive the itch. 
Doesn't that undershirt look ITCHY?!?!?
 It went well at school and his teacher was very cooperative in recording his activities throughout the day so that the cardiologist could compare his heart rate with the corresponding activities.  We got the results from the holter and the cardiologist says everything looks good and he is happy with that results.  That is reason for thanksgiving!!!!  Post-Fontan kids can often have rhythm problems later on in life and often need a pacemaker because of it.  We're thankful that there doesn't appear to be any rhythm problems and we can continue on with life as normal.

Tyson had his ECHO and cardiologist appointment in November and everything looks good with his echo; unchanged from last time - so that is always good news!!!!  The cardiologist still wants to send Ty for a cardiac MRI sometime before his next appointment within the next six months to assess the pulmonary vein stenosis and look for further degression.

ECHO time

ECG time
We managed to get in a visit with the dentist on the same day too.
Tyson with his cardiologist Dr McCrindle
Tyson being a character with our cardiac nurse, Stephanie

 We love these people so much - they really mean the world to us!  

As much as we love them though, we are happy we get to stay away from Sick Kids all winter long, the Lord willing.   We won't have to go back again until his upcoming MRI in April 2015, with results of this at his next cardiologist appointment in May 2015.  I'm so happy to not have to drive to the city this winter!
And of course, a visit with Mickey Mouse
Last weekend our family enjoyed the annual Christmas party from Starlight Children's Charity.  It was a fun day of crafts, singing, playing pool, eating scrumptious food, and meeting Santa.  I don't have the Santa pics yet but will post them when they get posted to Dropbox.


Enjoying all things crafty

Braden helps Addi with her tree ornament while Tyson works hard on a list for Santa

Tyson writing his first list for Santa

"Dear Santa, I hope you're staying warm.  I would like Splinter and April. Love Ty."

Mailing it away to Santa Claus

Me and Kenya recording our first single "Let it Go" from the Frozen soundtrack

Getting ready to record "Jingle Bells"



What a great day we had!  Thank-you Starlight!

October Update



In my last update I wrote that Tyson was adjusting to school very well.  While he is still enjoying school and managing ok while he’s there, he is becoming more and more tired as the days and weeks progress.  I still pick him up every day at 3:30pm so that we can get all the therapies & meds in on time before he has to hit the hay at 7pm.  This is working ok for him (and certainly better than taking the bus home) but he is definitely *done* at the end of the day.  His teacher says he is keeping up ok in class and hasn’t noticed any problems, but he has been a little quieter lately.  His interim report card came back with all “Goods” and “Excellents,” even in the social areas.  We’re very happy to read that!

From a 'lung health' perspective, he's been doing really well!  He has caught a few small sniffles since school started, but got over them ok just using his puffers and lots of physio - but his nebulizer has been collecting dust since his last hospital stay in June. We've started him on Mullein, an herbal remedy that expels mucous from the upper respiratory tract and develops the lungs...and a few other immune builders...and we've started him on lung physiotherapy and deep breathing exercises every day.  So far so good!

When Tyson comes home from school, he is often quite irritable and sometimes will just lay on the couch asking if he can please have dinner now so he can just go to bed.  When it’s time for his lung physiotherapy I have to try so hard to keep him awake, even with the tv on.   He enjoys the therapy so much and finds it very relaxing.  It’s kinda like a massage, so hey I’m sure anyone would fall asleep during a nice massage after a long hard day, right?!? 

Since starting school, Tyson is in bed by 7:00pm every night, weekends included.  Some nights he goes to bed at 6:30pm because he just can’t cope anymore.  While it’s nice to have him sleeping so early in the evening giving me more time with the other kids, it can be quite interesting trying to regiment our day to get him into bed so early.  I keep waiting for the adjustment period to be over so that he can maybe start going to bed a little later, like 7:30 even, just to give us a bit more breathing space, but it’s just not happening yet.  He started the first four weeks of school going to school every single day and not needing a break at all.  But for the past four weeks he’s needed at least one day off, or half a day off, every week to mentally unwind from the past few days and then gear up for the next few days.  Brian and I have never been too concerned with Tyson being so over-tired right now.  He’s our heart baby and he’s just started school full-time, so of course it’s going to take some adjusting - and he’s going to be tired!

Well, last Monday I took Tyson to see his pediatrician for his regular follow-up visit that we have every 3-4 months with him.  The Dr noticed that Tyson’s heart rate was a little sluggish compared to where it’s been in the past.  This Dr knows him very well, as Tyson is always under his care when he is hospitalized at Headwaters.  Usually his HR is in the 90s - ish, but Monday it was in the low 60s.  He said everything sounded ok with his heart and lungs, but then asked me if there had been a change in Tyson’s sleeping or activity levels.  After explaining that he has been really tired lately but it’s because he started school full-time, he asked when his next ECHO is, etc and asked me to keep an eye on his activity levels until his then. (We go to Sick Kids for ECHO, ECG, cardiology visit, dentist, thrombosis appt on November 12.)  

Now of course, don’t we start to second-guess everything? Is Tyson really tired just because of school or is he tired because his HR is too low and the blood isn’t pumping as well as it used to?
We’re very well aware that post-Fontan kids a lot of times will eventually need a pacemaker to help their heart keep its pace.  We’re not ignorant of the fact that low HR could mean the heart is weakening and needing a boost of some sort.  Sometimes I wish I didn’t know so much, maybe then I wouldn’t worry so much of what I know ‘could’ happen.  

I have called Tyson’s cardiologist to give him the update of what has been going on and ask if it’s ok to wait another two weeks before his next echo and check-up.  He says it’s fine to wait as long as we’re comfortable with where Tyson’s activity levels are right now (and he is ok – he’s still going to school and the teacher has not noticed a decrease in his energy, just that he’s quieter than normal.)   Dr. McCrindle has ordered a 24 hour holter monitor for Tyson to wear which will track his heart rate both awake and asleep.  The holter records the heart rhythms and tracks its electrical activity.  He would have to wear it during normal activity to see what his heart is doing while at rest, at play, or asleep.  So he will come home with one after his next appointment on November 12 and have to go to school and resume normal activity while wearing it.  The holter will give us the answers we need; if he is tired because something is mal-functioning in his heart, or if he’s just tired because school is a big adjustment for him. 

Prayers are always appreciated! 

I wanted to share with you another little blessing we received a few weeks ago.   Because Tyson needs to have his head and lungs facing in a downward position during physio, (so that any build-up of fluid which has loosened during physio can drain from his lungs) I had been looking into a wedge pillow so we could all be more comfortable during this daily routine.  The one I had priced was around $100 from the Home Health store in Orangeville.  Then my mom who works as a PSW for elderly people found out about a pillow that wasn’t being used in one of her client’s home.  This elderly man was happy to donate his late wife’s wedge pillow for Tyson to use.  He is the same man who donated his wife’s hospital bed to us two winters ago, so that we could raise the head of Tyson’s bed for better lung drainage during cold and flu season.  We still LOVE this bed and I believe it has helped Tyson breathe easier at nights, and is a very handy tool in treating and preventing pneumonia.  Anyway, when this kind man found out Tyson needed a wedge pillow for physio, he gave his to us!  We are so thankful!  I don’t have a picture of Tyson getting physio using his new pillow, but I do have a picture of Tyson doing physio on his friend Porky the Pig.  You can see in the picture the shape of the pillow and how it is helpful for postural drainage while we do Tyson’s physio.  We are blessed in so many ways.  

September...So Far So Good!



   It’s high-time I post another update on Tyson!   Summer went well and he stayed extremely healthy, despite a small cold after we came home from a rainy, cold camping trip.  We did his chest physio and breathing exercises faithfully 4X a day, and kept up with his puffers, and we are amazed and thankful that he got over it without the use of his nebulizer machine or the need for antibiotics.  Of course we’re never sure what type of cold he’s catching when the symptoms begin, and we don’t know if it would have developed into pneumonia for him, but I’d like to say that the physio really helped him expel the gunk from his lungs.  I could definitely feel a rattle in his chest when he did his deep breathing exercises, but we’re thankful that nothing serious transpired.  And we’re certainly thankful that he could fight it without the use of antibiotics, nor did we have to turn to his nebulizer machine!    We give him oregano oil regularly as an immune booster, but give it 3-4X a day when we know he’s fighting an illness.

   Tyson had a CT scan of his heart and lungs in early August. 

We didn't know he'd need an IV (I should have figured that out!) but he was so brave!

CT scan
The respirologist reported back to me that there is nothing in his lungs that would pre-dispose him to pneumonia, and there is nothing in his lungs to indicate that he has any long-term damage from his recurring pneumonia. We're definitely thankful for this news!  In October Tyson will go for a complete immunology work-up at Sick Kids. 

   Tyson started Grade One two weeks ago and so far things are going fairly smoothly!  We were very prepared for him to be tired, grumpy, and run-down.  To be honest, we didn’t really think he’d have enough energy to go to school all day, every day.  But he has pleasantly surprised us!   

First Day of School
    Whenever I thought about Ty going to Grade One, I thought we'd need to give him at least one ‘mental health day’ per week, or at least every once in a while, but so far he is managing ok.  He goes on the bus every morning at 7:18am but I pick him up in the afternoons because the bus doesn’t drop-off until till 4:50pm, and I know that is too long of a day for him.  Not only that, with the medication and physio routines we have going on for Tyson, there just aren’t enough hours in the day if he goes home on the bus.  But he is doing ok, in pretty good spirits most days, smiling lots, loving school, and there have only been a few days that he was too tired to move afterwards.  But overall, he is adjusting much better than we ever could have imagined.

   Having said that, I have never had to have such a regimented schedule in our house in order to get Tyson to bed on time.  Dinner is served when dinner is ready.  Some days it's ready at 5:30, other days at 6:00, and sometimes it is even later than that, depending on our events for the day.  Now however, with Tyson getting up every morning at 6:30 for school, he HAAAAS to be in bed at 7:00pm at the very latest, or he won’t get enough sleep.  He has always needed between 12-13 hours of sleep per night, so I question whether or not 7:00pm-6:30am is going to be enough for him, or if it will eventually catch up to him.   As a result, dinner has to be ready by 5:30pm every night, because we have to start his physio and meds routine by 6:30pm in order to get everything done on time.  So dinner has to be ready on time every night, without fail, or Tyson’s sleep (and in turn, his health) will suffer.  

   It is a little stressful having to be that regimented, as normally we just take things as they come and go with the flow.  With five children, you have to have some sort of routine, but you also have to let things happen as they happen and not be too stressed out about the little things.  But I don’t consider sleep to be a little thing, for Tyson’s sake.  When he gets behind on sleep he can be very irritable, for one,  but he is also more likely to get sick. 

   I’ve also made a physio  meds ‘schedule’ and posted it on the fridge, and his physio exercises on the bulletin board in his room.  Tyson is on medications for his heart and his asthma, and a fair amount of vitamins and supplements to boost his immune system and keep his lungs strong.  I have been taking on his meds and physio all by myself, mostly because I’m the only one that can ever remember what he needs to take and when he needs to take it.  So if I ever want/need to get out of the house for an evening, for Bible study or committee meetings or just to get out, I want to be able to do that without worrying about if they are remembering Tyson’s meds.   If the schedule is organized and posted where all family members can see them, then they can follow the instructions without me.   I felt an immense pressure being lifted from my shoulders as soon as I did that.  I should have done it a long time ago, but I didn’t want to appear like a drill sergeant.  We have enough charts and check-lists posted in our house, without adding another one.  But now I’m glad I did it :) 

Dad caught a pic of Mom & Ty during physio. 

   Tyson has been handling Grade One like any of my other kids.  His teacher says he is tired at the end of the day, but most of the other kids are too.  I’m sure that picking him up from school most days is helping him cope.  He did come home on the bus once this week, and when he got home he was quite intolerable.  That was definitely  pushing it for him.  He needed his space, and we gave it to him, but I could tell it was too much for him.  So I will continue to pick him up from school as long and as often as he needs me to. To be honest, I really don’t know how I would fit everything into his evening anyway if he didn’t get home till 4:50pm and has to be in bed at 7:00pm. 
   I’m not sure how Tyson is keeping up academically, but I do know he needs to continue working on reading.  He hasn’t caught on to reading as quickly as my other kids have. First things first, we need to help him adjust to school full-time. 

   In the middle of summer, Tyson lost his first tooth!  Surprisingly, he didn’t bleed much longer than my other kids did.  This week, he lost his second tooth just after brushing his teeth on Thursday night…when he was already late for bed…because supper was late…because the kids had piano lessons after school…and I had to rush off to an Education Committee meeting at the school…. and Brian wasn’t home to help…AND Tyson bled for about 15 minutes.  So although we have our ‘schedule,’ it’s still likely that some nights it just can’t be followed. 



Now let’s see if Tyson can avoid the stomach bug that hit our house this weekend… :(

Appointments & Schedules



Although we’re enjoying a very healthy summer, it seems like this is the summer of appointments.  Obviously we want to try and get as many appointments in before Tyson starts school full-time in September but this is getting a little crazy and the summer is flying by WAY too fast.  Since Tyson’s past pneumonia in June, he has seen the family Dr twice, the Pediatrician, the cardiologist, the dentist,, two ENTs – one local and one Sick Kids ENT, and the respirologist in Brampton. It’s getting harder and harder to fit in all the Sick Kids appointments into one day.  At Sick Kids, Tyson is followed by cardiology, respirology, thrombosis, ENT, dental, and now we can add immunology to the list too. And that doesn’t include the many different tests that need to be done there regularly: chest x-rays, Echos, ECGs, bone density scans, MRIs, CT scans, nasal nitric oxide tests, sweat chloride tests, and occasionally bloodwork.   We’ve already been to Sick Kids twice this summer and now we have to go next week too. 

Tyson had a respirology appointment on Monday in Brampton.  The respirologist is a specialist who monitors Tyson’s asthma conditions and makes recommendations for how to treat and prevent asthma attacks and his frequent pneumonia.  Since Tyson last saw the respirologist in February, he has had pneumonia twice and was also hospitalized once.  He has been seeing this respirologist for over three years but for the first year, we were just trying to manage the number of asthma attacks Tyson was having.  Once we got the medication dosages accurate for Tyson, he still continued to catch pneumonia and was in and out of the hospital.  The respirologist, cardiologist, and pediatrician kept saying Tyson would ‘outgrow’ the recurring pneumonia.  However, now that Tyson is getting older but still catching pneumonia and having to go on antibiotics frequently, he is starting to run other tests to make sure there are no other underlying problems which could cause it. 

Tyson’s heart defect affects his immune system and puts him at greater risk of catching colds and flus. The narrow pulmonary veins could also contribute to him catching colds/pneumonia more frequently than others with his exact same heart condition.  However, usually by the time the child reaches age 3 or 4, or are post-Fontan, they begin to outgrow the constant illnesses and they should require intervention less often.  Although Tyson’s hospital admissions are fewer in number than in the first three years of his life, he is still on antibiotics about 4-5 times per year and the respirologist is still concerned that the recommended therapies (preventative supplements, saline sprays, chest physio, deep breathing exercises) are not helping like they should.  

Last fall Tyson had a sweat chloride test done to test for other lung diseases like cystic fibrosis, to make sure it’s only asthma that he has and not another lung disease.  Those test results came back normal.  He also had a nasal nitric oxide test to screen for NO levels in his breath (to indicate the severity of his asthma.)  Now the Dr is referring him to the Immunology Department at Sick Kids and wants Tyson to have a full immunology work-up done, as well as a CT scan of his lungs to make sure there isn’t something structurally wrong with his lungs.  So he made the referral and I already got a phone call from Sick Kids about his CT scan.  We go next Thursday already.   It’s actually Merrick’s birthday, as well as two days before we leave for our holidays.  There are so many other things I’d rather be doing on that day, but this summer seems to be the summer of appointments.  I’m not being as productive as I usually am in a summer, because summer is Tyson’s only healthy time so we usually enjoy a medical-intervention-free summer, but because of his recent hospital stay in June it’s just not going to be a typical summer. 

Back in the fall his respirologist recommended we start the physio/deep breathing exercises as soon as Tyson starts coughing.   So I  had called up Tyson’s physiotherapist who worked with him when he was learning to roll, crawl, and walk.  She came for a visit and walked me through how to do different percussion exercises on his lungs to loosen up the mucous and prevent it from sticking to his lungs.  We did these exercises 3-4 times a day.  We also learned staged breathing and deep breathing exercises that we had to do 10 repetitions,  every hour of the day.   But during his last two colds, we didn’t really notice that the physio made much of a difference.    Tyson still ended up on antibiotics 4 times last season in addition to a hospital admission which required O2 and IV antibiotics.

Now the respirologist is recommending that we do the physio/deep breathing every day. The whole routine takes about 20-30 minutes.  When we first started physio with him in the winter, I was thinking that in an effort to save time I could do physio at the same time as while Tyson was having his ventolin mask.  But this proved unsuccessful because for the physio, he needs to be head-down for postural drainage, and with his mask he needs to sit up straight or his medicine won’t nebulize properly.   So the whole routine of mask & physio took 45-50 minutes.  3-4 times per day.  Exhausting.   I feel selfish to think that this is too much time to spend with Tyson in order to keep him healthy, but I am a very busy Mom of five children and let’s face it they need me too.  This routine, on top of all his other routines and meds, takes a huge chunk out of my day.  . 

Once Tyson starts school full-time in September, he will have very long days.  We live in a rural area where we are only 10 minutes away from the school (about 14 km of rural driving.)  But we also happen to live right around the corner from the bus driver, so our kids have very long days on the bus,  getting on at 7:15am and arriving home at 4:50pm.  In the winter with slippery road conditions, it can often be after 5:00pm.  Last year Tyson went to Kindergarten on Tuesdays and Thursdays, so we decided I’d need to pick my kids up from school every Tuesday and Thursday so that Tyson’s day would not be too long.   There are just not enough hours in the day to get all his physio/mask/meds done if he gets home at 4:50pm and needs to be in bed by 7:30pm in order to get enough sleep for him to have energy to last all day at school. 

So my options for the upcoming school year are: 
a)      Sell our house and move closer to the school - and then ultimately closer to Orangeville appointments and Sick Kids appointments (a rather expensive option, but not totally out of the question) 
b)    Write a letter to the Transportation Committee asking them to re-route the buses to give our family less time on the bus (Brian serves on the committee so he feels this wouldn’t be fair to ask) 
c)  Suck it up and pick my kids up every single day so that we have enough time in our day to fill Tyson’s needs (also an expensive and timely option but probably the only viable option.)   

      Prayers would be appreciated for patience as we learn new routines.