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!

2015 in Review

I am MORE than just a LITTLE embarrassed about how LONG it's been since our last update.  I keep meaning to give an update, even just a short one, but honestly we've just been so busy living life to the fullest. 

From now on though if you don't hear from us, take that as a very good sign!  I usually post more often if Tyson is unwell.  Now that he seems to be flying through life, there are definitely so many things to rejoice over but so very little time to sit down and blog.

Here's a re-cap of Tyson's summer:
















No family holiday would be complete without a trip to the ER.  Tyson fell off his bike and had quite a gash on his knee.  (Can you imagine what that looked like being on coumadin?!?)  Let me tell you something: Cambridge Hospital has the SLOWEST ER ever.....several hours later Tyson finally got his stitches.  Not home till after midnight...poor kid was exhausted!
Kamryn, Tyson, and Reid.  Heart Heroes.
We enjoyed a week away at a cottage in Quebec, compliments of one of the sponsors of Cardiac Kids.  Here we had the privilege to vacation with a fellow heart family, the Arbeaus, and we also met another heart family, the Gobeils.  We all had an absolute blast!






Enjoying some down time watching a movie
 In August we traveled to Burlington a couple of times to watch history in the making.  Steve Gaul, drummer and Heart Dad, broke the world record for solo drumming by drumming for 134 consecutive hours, raising over $40,000 for Cardiac Kids, a charity very dear to us.


This is Tyson with Steve shortly after breaking the Guinness world record.



Every day Steve drummed for a different cardiac kid.  On Tuesday Steve drummed for Tyson.  This plaque was displayed as inspiration for Steve to keep drumming, and to help raise awareness of CHD to those witnessing the event.  This plaque is now hanging in Tyson's bedroom above his bed.  Love it!  It's such a great representation of his journey with CHD.

Tyson after the Drumathon.  Looking a little sleepy....lol
Tyson and Meghan always hitting it off
Every year we participate in Miracle Treat Day to raise money for Sick Kids Foundation.  Of course, we don't really need an excuse to eat blizzards, but hey it's WIN WIN!  The manager came up to us and asked if next year Tyson would like to go behind the counter and make blizzards for customers.  


Tyson had the ultrasound on his kidney in June and then a follow-up appointment with the nephrologist at Sick Kids in September.  We are thankful that this cyst on Tyson's kidney is indeed a 'simple cyst' which is most likely harmless.  The Dr would like to do a few more ultrasounds in the next year or so to keep an eye on if the cyst changes in shape or size during that time, so we have added another department to the list of departments that Tyson visits at Sick Kids.

Tyson had another ultrasound on his kidney done in November on the same day as his cardiologist appointment. It was a very busy day!

9:00 Bone Density Scan
10:00 Thrombosis
11:30 Kidney ultrasound
1:20 ECG
2:00 ECHO
3:00 Cardiologist

The results from the bone density scan are unchanged since last year so that is good.  The concerns we had at the thrombosis clinic at this time last year with his nose bleeds have subsided as we have found natural solutions for prevention.
His heart is unchanged from last time and there is no further deterioration.  We are thankful to be enjoying many months of wonderful health for Tyson!

As you may or may not know, our family has started using essential oils for all our health concerns, and Tyson is no exception.  In fact, the whole reason we decided to give EOs a try was BECAUSE of Tyson.
At this time last year, Tyson was still on his nebulizer (ventoling mask) every four hours, even round the clock at times.  He was on 4 different medications for his asthma alone.  Since we started using EOs in his diffuser and applying them topically on his chest & back every day, he has been able to slowly be weaned from his meds.  He had a short hospital stay and a round of IV antibiotics because of pneumonia in February but since then.......

HE HAS NOT BEEN SICK AT ALL!

Since March 2015, once he got well from his last pneumonia, we weaned him OFF his nebulizer machine.  Then at the end of the month, we took him OFF his Flovent puffer (that's the orange cortic-steroid.)
Since he is normally really healthy over the summer months,  we also took him OFF his Singulair medication (the oral med that prevents inflammation in his airways.  We did so purposely 6 weeks before seeing his respirologist so that the med would be completely out of his body and see what the Dr would say.  Good news!  He sounds great without the meds!

We were warned by both his pediatrician and respirologist to keep an open mind that if Tyson did begin coughing or wheezing again once school starts again, we'd have to give him puffers and the Singulair again.

Tyson's summer was filled with amazing health and great opportunities for us as a family to enjoy our time together.  

Since Tyson started school in September, he has been quite healthy.  I don't think he's missed any days due to illness (none that I can recall at this time) and the minute he starts feeling 'off' or under the weather, we begin the routine boosting his immune system and killing the bug with our essential oils.  We are so blessed to have found these oils!!!


When we first started using EOs last year, after we had bought our first kit, Tyson got really sick with pneumonia.  We took him to the Dr, the Dr confirmed pneumonia, he wrote a prescription, we filled it out and then let the antibiotics sit in the kitchen cupboard.  We got to work with the oils, were diligent in giving him the rest that his body needed, and at one time I had said to Brian, "If these oils work....and they can help my complicated heart boy get over pneumonia...then I will proclaim essential oils from the rooftops!"

Well, it worked!  Tyson got over it and did not need to use his antibiotics!  It seemed like a miracle, and indeed it was by the grace of God that he was able to return to good health with the use of these oils.  His saturations did drop a little but they stayed stable enough that he didn't need oxygen, even despite the confirmed case of pneumonia by his Dr.  Pretty amazing, huh?

Now, I have found a new passion.  I've always had a passion for my fellow heart families.  Now I have found a passion for helping others find natural solutions to achieve better health and wellness.  If you are interested in hearing more about essential oils and what they can do for you, feel free to send me an email. (Address on top right hand side of blog.)

We have oils for health and wellness, oils for weight management, mood management; we also have whole-food vitamins and supplements that are also infused with essential oils, hair care products, and skin care products.  If you have any questions at all, feel free to email me and I'd be happy to find an essential oil or two to suit your family's needs.  I even give out free essential oil gift packages with a free oil sample if you're wanting to learn more!


Our family was also blessed with a free stay at Great Wolf Lodge in November from Starlight Children's Foundation.  Do you see these two cuties in the picture above?  They are the same age and have the same heart condition....and they were both hospitalized at Sick Kids at the same time way back when they had their Fontan surgeries!
It was such a blessing to be reunited with Lucca and his family after almost five years!  Thank-you Starlight for allowing these boys to feel 'normal' at the water park, a place where people usually stare at them.  I'm also so thankful for the chance to catch up with Lucca's Mom and chat with her about 'heart stuff.'

It is almost Christmas time and there is not a flake of snow on the ground.  Normally, the constant rise and fall of temperatures send most Heart Moms into a panic, because of what it does to their little ones' airways....but THIS year I am not scared.

THIS year, this is me:























Be Strong and Courageous

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”  Joshua 1:9 

Please pray with us and for us today Tyson has to go for his ultrasound on his kidney this afternoon at Sick Kids (of course, where else would we go for these types of things?  Only the best hospital in the world - the place where Tyson's life was saved *more than a few times*.)  

I've been nervous about this for weeks because the kidneys are really is not something I am familiar with at all.  I know so much about the heart but not a whole lot about the kidneys.  The only thing I know about the kidneys and how it relates to the heart is that often kidney failure and pulmonary hypertension are linked together.  I have no idea what type of cyst is on Tyson's kidney and I know that 'so far' he hasn't been diagnosed with pulmonary hypertension...but given the high venous pressures in his pulmonary veins I guess that puts him at greater risk for PH.

Just please pray that the cyst is a 'simple cyst' requiring no intervention and pray that it's completely unrelated to his heart. 

Melissa

MRI & ECHO Results Day...

It doesn't matter how old your cardiac kid gets or how well they're doing, I think as parents we will *always* be nervous for the cardiology follow-ups. The 'what ifs' can be haunting. Tyson has been doing really well, seeing cardiology every 6 months, and he has yearly cardiac MRIs to check on his heart function and monitor the status of his narrow pulmonary veins. His heart function has been (very slowly) regressing and his pulmonary veins are under careful scrutiny. Every year when I ask the cardiologist for a copy of the MRI report, he willingly emails it over. It gives me time to read the findings, work my way through the emotions that come along with any changes, and then know which questions to ask when we see him for follow-up. This year however, when I emailed our cardiologist for the report, he said he is "reluctant to forward a copy of the MRI and echo reports until I have reviewed them with you and also examined Tyson." 

!?!?! 

This happened the third week of April....and I have been on pins and needles ever since. I haven't had horrible anxiety like I used to years ago when Tyson was much younger because now I have some wonderful essential oils that help me with this, but even still it's not easy waiting and wondering why he would suddenly decide not to send us the reports.  The 'what ifs' are sometimes consuming but if there's one thing we've learned in this heart journey we're on, it's to always look at the 'now.'  Right now, Tyson is doing great and from a lung-health perspective, he's had his best winter ever!  Only on antibiotics ONCE all fall/winter/spring!  That is amazing progress!
Still, even though Tyson is doing well and there haven't been noticeable changes in his activity level, I'm still feeling nervous. Today is the day we find out if there really is something to be concerned about, or if Tyson's cardiologist was just being "Dr. M." 

I will keep you all posted by adding to the bottom of this blog post.  
Melissa 

So today's news is good and .... well I'm not really sure if the other news is considered 'bad' news.  At this point I don't know yet.  

The good news is that there is relatively little change in Tyson's heart function.  The same concerns with the shunting, kinked SVC, leaky mitral valve, and severe pulmonary vein stenosis are all still there.  We didn't really think they'd go away ;) 

One thing that was noticed on the MRI in April that may be a concern is that Tyson has a cyst/mass in his right kidney that they want to investigate with nephrology. The cyst was there when he was a baby, I remember, but apparently then it was very small and not a concern. At his last MRI a year ago it was 12 mm in size and is now 22 X 22 X 24 mm.  So Dr. M wants Tyson to have an ultrasound of his kidneys and then a follow-up with a nephrologist to investigate if intervention is needed.

At this point I have no idea what this means, but when I asked if it was possible that it was a cancerous tumour, Dr. M said it's highly unlikely but that he's not a kidney specialist he's a heart specialist.  I do know that 24 mm seems to be a fairly large mass to be on such a small kidney.   Tyson will have an ultrasound and appointment with nephrology in the next few weeks and we will update you when we know anything more. 

Just add another specialist to the list of departments we visit at Sick Kids, no biggie ;) 

Thanks all for your thoughts, prayers, texts and emails throughout the day.  We feel your love.  
Melissa

MRI and ECHO Day

Monday was MRI and ECHO day at Sick Kids.  Brian was able to come with us this time, and we left bright and early at 6am to be there for 8:30am (we need time for a Timmy's stop too!)

This was Tyson's very first non-GA MRI.  This means he didn't need general anesthetic but was allowed to be awake for the procedure.  Normally they do GA because the MRIs are approximately an hour long and you have to remain perfectly still.  It's amazing how nervous I *didn't* get for this MRI.  For all of Tyson's previous MRIs, I'm a nervous wreck for the whole week prior because I hate that Tyson has to be intubated and under general anesthetic.  With his history of pneumonia, having a breathing tube shoved down his airways is very risky.  Not to mention the general risk of a cardiac kid being under general anesthetic.  Yeah, I am so glad he didn't have to go down that road this time.

Tyson was such a trooper.  We had told him in March that he had to have an MRI in April but we didn't give him a date, nor did we remind him the night before.  He had been to Brian's hockey game on Friday night and was up till past 11pm.  With that late of a night, he needed to catch up on sleep and we knew that if we told him on Sunday night that he was having an MRI in the morning, he would not sleep well and would be up most of the night worrying.  So we didn't tell him until we woke him up to leave that morning.  Our other kids knew about the MRI on Sunday night because they had to get themselves on the school bus by themselves so we reviewed things with them the night before.  (I love that they're getting older!  Whenever we've have these early appointments in the past, they have had to spend the night at a friend's house the night before because we have to leave so early in the morning.  But now they are able to get themselves on the bus, I love it!) 

Once Tyson got into his hospital gown, he had to have an IV which he didn't love of course but the nurses are always so patient with him.  I feel bad for the other sleeping babies on the other side of the PACU who were having their sedate echos.  I totally remember being on that side of the room, and it was never fun hearing another child on the other side of the room screaming in fright when you're trying so hard to get your child to fall asleep or stay asleep.  Once the IV was over,  I walked with him to the MRI room.  He laid down on the table, he was secured with some heavy protective contraptions over his chest, strapped in tight, headphones on, movie goggles on, and into the MRI machine he went.   At one time as he was getting all geared up, he did manage to squeak out a soft "Mommy, I'm scared," but he remained calm once he knew I was not going to leave his side for a second.  I was able to sit in the MRI room with him, touching his feet to let him know I was still there.  I am so thankful for the wonderful technology at Sick Kids Hospital that allowed Tyson to watch his favorite Ninja Turtle movie through the movie goggles while he had his MRI.  And he was able to watch almost the entire movie, that's how long his MRI was!!!  For me, it was so long and boring.  I almost feel asleep a few times because it's so loud in there (I had headphones on and it's still loud) but every time I was almost in dreamland, the MRI bed would move position to take different measurements. 

Once the MRI was done (an hour and ten minutes later!!!!) we found Brian and Addisyn hanging out downstairs.  Addisyn loves going to Sick Kids because she gets to play in the Play Park and the volunteers there also take her to Story Time at the library.  Although it's an early start to her day, we like having her with us and then she also gets to share in Tyson's Sick Kids journey alongside him. 

After lunch, Tyson went to 4B for his ECHO.  This is also another hour-long-lay-still-and-quiet procedure.  But he's been doing non-sedate ECHOs since he was 3 so this is old hat for him.

We won't have results from the MRI  for a little while yet.  Tyson's next cardiology appointment is May 20 so we should know by then.  Actually, I've asked to have a copy of the MRI and ECHO reports emailed to me so that I can review them before the cardio appointment.  I like to see the results with my own eyes before going to Dr McCrindle so that Brian and I know what questions to ask.

We'll keep you posted.

We met Tyson's HRHS/TA buddy Chelsie at Sick Kids that day.  It's neat to run into other people that have started off as virtual friends and that turn into real-life friends.  Chelsie's Mom is one of the ladies who started the "Hearts of 4D - Sick Kids" Facebook group.   

Chelsie (4)  Tyson (6) 



March Update

I apologize for being so seriously behind in my blogging!  I assume that you would all assume that Tyson made it safely home from the hospital in February.  Not only did he make it home, we also made it to Florida for our holiday too!  Tyson got home on Saturday afternoon, spent Sunday and Monday recuperating at home.  By Monday I knew he was 100% back to good health so off to school he went on Tuesday.  Even though it was only for one day because we left for Florida on Wednesday, it was good for him to get out of the house and out of his sister's face for the day.

Our trip to Florida was very nice.  Even though the weather wasn't quite as warm as we'd hoped, you just never know what to expect for Florida weather in February and it certainly was much nicer than the -35 degrees experienced back at home in Canada!
We spent a couple of days reminiscing Tyson’s wish trip by visiting Give Kids the World as a welcome back family.  It sure was good to see our old friend Mickey Mouse again!  We sure missed him and it was good to experience again the joy he brought to Tyson's face, and this time Addisyn really enjoyed him too.

2013
2015
2013
2015
 I love looking at these pictures and comparing them, seeing how much our family has grown.  It's especially nice to see that Tyson is actually slowly growing too!  When I look at him compared to the other kids in his class, they are continuing to grow taller and taller and Tyson is growing much slower than them.  But looking at these pictures together tells me that he IS growing, so that is good.  And he finally hit 40 pounds last month, so he is officially allowed to be sitting in a booster seat in the van. 

The drive down to Florida actually wasn’t as bad as I thought it would be!!!!  I pictured grumpy, whining children the whole way down with lots of fighting and bickering coming from the back seat, but they didn't gripe and complain at all!  We gave Tyson his own seat in the middle of the van, rather than our original plan of putting the three little ones in the back bench seat.  I think this was the best decision for everybody; that way Tyson had his own space and no one could be blamed for bothering him or keeping him awake when he got sleepy, etc.  The kids were as good as gold on the way there and on the way back and as much as I was so worried about how the drive would go I can say we’d definitely do it again.  And it will only get easier as the kids get older :)

We left Florida again on Thursday evening to time the drive so that we could make an overnight stop in Ohio to meet a special little almost-5-year old boy and his beautiful family.  Jacob Gaume was born with Hypoplastic Right Heart Syndrome, Tricuspid Atresia, Transposition of the Great Arteries, and ASD & VSD...
...JUST LIKE TYSON!

Not only that, but he also struggles with pulmonary vein stenosis in his left pulmonary veins...
...JUST LIKE TYSON!  

His Mom Jennifer and I met on an online support group on Facebook four years ago when Jacob was just a baby and Tyson was just about going in for his Fontan surgery. Because our sons’ hearts were so similar we made an instant connection.  We started by private messaging each other and sharing our son’s stories.  We continued our friendship over the phone; crying with each other over life’s challenges and fears, rejoicing with each other over milestones met, pouring our hearts out to each other, sharing our faith with each other and supporting each other the way only a fellow Heart Mom can.  It’s been amazing to develop such a strong connection with Jenn over the years, and when she found out we were driving to Florida this year, she said to me“You HAVE to stay with us!” Jenn and Ken, Maddie, Drew, Jacob, and Ryan:  THANK-YOU for opening your home to us and making us feel so loved and welcome. It is truly a blessing to have met you all, and now we can call you our 'real-life friends.' 


Me & Tyson and Jennifer & Jacob

Now that winter is almost over, we are gearing up and praying for a healthy spring.  Afterall, Tyson already had his hospital stay for 2015 already, right?  As far as colds/pneumonia goes, he seems to have one 'big one' every winter, so hopefully February was his big one. We’re praying that he's already filled his quota for the year and he can be healthy for the rest of the year :)  He’s been SO healthy since his last hospital stay! (Hmmm where have I heard these words before…they seem to be a favorite phrase on this blog!!)

As you know we’ve been using essential oils in our family for a while now.  This past winter we started using even more of these oils, putting them to work not only for Tyson but for the rest of the family too.  The oils we use are 100% Certified Pure Therapeutic Grade quality oils from doTerra.  I love having a slew of things right at my finger tips to help us through the minor infections and boost our immune systems at the same time.  We're all happy with the results that we've been seeing in our family.   (And I sleep so well at night now!) It really is amazing.

Other than that one respiratory bug that hit Tyson in February, our other children have had the healthiest winter they’ve ever had!  No bad viral infections, no bad colds, no stomach flu, nothing serious that just dragged on and on.  It's amazing when you 'nip the bug in the bud' quickly enough and start taking oils at the first sign of infection, you can reduce a head cold to 24 hours maximum with the use of essential oils.  It’s amazing! We realize that Tyson is a very special case and sometimes it takes longer for natural remedies to work for him.  The toughest part is because of his lower oxygen levels, we don't always have a lot of time to wait for them to work.   I feel like I am more educated about the oils now than I was even in February when he was in the hospital and feel like now that I know exactly how to treat pneumonia, I will treat it differently the next time.   But at the same time,  Tyson did get over the worst part of the infection at home, and we were able to keep him at home a lot longer than other times.   So I have to stop beating myself up about it and thinking about what I could have done differently to prevent a hospital stay.  I did what I could and it turned what could have been a week long stay into only a 2-day stay.  I do know what I'd do differently next time though. 

We continue on with Tyson's lung physio and deep breathing exercises and he is doing very well with the vitamins and supplements that we're giving him to boost his immune system.  He is happy and enjoying school (sort of...we have to draaaaaag him out of bed in the morning but once he gets there he seems to have a good time.) He had a great second term report card; his teacher says he is full of life! And we are proud of how much he is reading and learning. 

March Break is here and although his brothers and sisters are busy with sleep-overs and parties, Tyson is laying low this week.  He is super duper healthy and we don't want to mess with that.  His body thrives on proper sleep and keeping him in routine this week will help keep him healthy.  March and April are really tough months on him so please pray with us that we can avoid the hospital.  That seems to be my ultimate goal as a Mom these days:  keeping Tyson out of the hospital and keeping the home life stable. Ultimately, it is not in our hands, but I feel blessed to be able to use the things that God has created from the beginning of the world to keep my family healthy. 


Silly Antics Means He's Feeling Better And Ready to Go Home!
Ty slept super well last night and didn't need any O2 at all.  His O2 sats stayed 83ish or slightly higher all night.  Sats monitor was allowed to come off today to free up a finger, with 'spot checks' every 4 hours to make sure he's maintaining good saturations.  The Dr saw him this morning and said he doesn't sound a whole lot better yet so we'd better stay a little longer.  That's ok, Tyson is having an ok time.  His IV line is only connected for the duration of his med infusion.  Because he's eating and drinking well, he doesn't need IV fluids so he doesn't stay connected.  It sure is nice for him to have free hands to move around and the ability to take an occasional short walk around the hospital.

I called our medical/travel insurance company today to inquire about how Tyson's hospital stay would affect his coverage for our upcoming trip to Florida next week.  The representative told me that Tyson would still be covered for all his pre-existing health conditions that are stable and controlled - including his heart condition - with the exception of pneumonia.  So if he catches pneumonia while we're down in Florida, we won't be covered, but if anything else happens, we still have coverage!  WE ARE SO EXCITED TO HEAR THIS!  IT MEANS WE ARE STILL GOING TO FLORIDA!!!  :D Once Tyson gets home from the hospital, he will remain on oral abx for a few days and based on past experiences, he will be the healthiest he's ever been in a long time by the time we're ready to leave!  So we shouldn't need to worry about pneumonia....and I'm pretty sure that warm Florida sunshine will do him a world of good!   (And boy am I ever looking for a nice holiday after the past week I've had.)

A Visit From Banner Reporter Alex - She Brought Captain American!
Today we were supposed to meet with a reporter from the Orangeville Banner.  Since we couldn't meet at our house as planned, Alex decided to come visit us at the hospital!  And Tyson loved her because she brought him a Captain America action figure, which he hasn't put down since he got it! 
Last night Tyson's Aunt Joni came to visit and she brought him a Ninja Turtle colouring book and a brand new pack of markers.  Today when I told him that Grandma was coming for a visit, Tyson asked me, "Is she bringing me a present too?"  LOL  Spoiled much?  Grandma did bring lunch and his sister Addisyn....whom he loved teasing and the feelings were mutual.  *sigh* those two....

They Love to Hate Each Other

Hey Look!  They Aren't Fighting In This Picture!
This afternoon I ran into another friend in the hospital.  She and I are both Heart Moms from small-town Shelburne, and we met on a Cardiac Sick Kids support group on Facebook.  Once we discovered we both lived in Shelburne, ON we instantly became FB friends and started chatting, with intentions to eventually meet up together.  So far I have bumped into her twice - and BOTH times were in the hospital!  The first time was in the halls of Sick Kids while we were visiting one of Tyson's heart friends earlier in January, and then today we bumped into each other at Headwaters.  We have to stop meeting at the hospital and try to get together for tea sometime, once everyone is healthy again!

Hopefully tomorrow we will get to go home?!  I am trying not to get my hopes up, because we really truly never know....but Tyson is going to start doing cartwheels out of his bed soon if we're not careful ;)

Another Visit to Headwaters

Tyson caught a bad head cold last weekend which developed into every symptom you can name under the sun.  Headache, sore throat, stuffy nose, cough, sore tummy, fever, fatigue, etc.  At first we thought it was just viral so we kept him home and tried to manage it with essential oils and lots of rest. 

We kept him home from school at the first sight of the infection to keep on top of it instead of trying to play catch-up like last time.  We oiled.  We flu bombed.  We used chest rub and veggie caps regularly.  We did ventolin masks and chest physio and deep breathing.
On Saturday, we realized the veggie caps were upsetting his tummy and he wasn't keeping food down.  His sats took a nose-dive, his INR sky-rocketed, and we *needed* to get something into him that would stay into him so we started him on the oral antibiotics hiding away in our kitchen cupboard, tucked him into bed, and prayed for better health in the morning.   As always, a good night's sleep can go a long way.  We continued to flu bomb and use chest rub and do everything we possibly could to keep him out of the hospital.

Sunday morning we saw some improvement and his sats were stable so we continued to try keep him at home. Monday, even more improvement and even a smile or two!  Tuesday, he was almost back to his normal self again, but still lots and lots of coughing and the O2 sats lagged behind, especially at nights.  We figured the oral antibiotics just needed more time and Tyson needed more rest (tv watching and Xbox playing) and he'd eventually get better. Even walking up a flight of stairs caused a lot of huffing and puffing, so we just kept him quiet and tried not to overwork him, just trying so hard to  avoid another hospital stay. 

Watching his Dad and siblings playing hockey on the outdoor rink is not nearly as fun as being out there himself!
I brought him in to the family doctor today because although his mood had improved and he is being his normal goofy self, the cough was still very junky-sounding and his saturations had been hovering at 80-81 for three days straight, even lower from time to time when he was too active, and especially lower overnight.  His sats have been too low for too long and there should have been more improvement by now.

O2 saturations at the doctor were 78-79 (on both his sats monitor and mine) and the doctor didn't like how his chest sounded...so he sent us off to emerg for chest xrays.

ER Dr ordered chest xrays and surprise, surprise, Tyson has pneumonia again.  Six days on oral antibiotics at home, and all the essential oils we've used did nothing but keep him from getting worse.  They allowed him to plateau but didn't kill the pneumonia.  His bloodwork was ok, INR ok again, but the ER Dr was not comfortable sending us home with just another dose of oral antibiotics.

In light of the fact that we are supposed to be leaving for our Florida vacation, I begged the Dr to just give him a bolus of IV meds, send us home, then we could come back again tonight and then again in the morning.  He did discuss it with the pediatrician but they both agreed that they rarely send a healthy child home on IV antibiotics, let alone a child with a severe heart condition.  *I tried...*


Hospital PJs are so cute!

So we are here until his sats improve and his chest sounds a lot better.  The pediatrician (Dr Oyefeso) doesn't think we'll be here for too long but didn't want to take any chances with his heart.  Having low sats like that for too long can have serious impact on his heart.  I get it.  But I just wish he could have pulled through at home.  It was not for lack of trying.

So are we still going to Florida next week?  We'll likely make it home in time....and Tyson will likely be the healthiest he's ever been in his life by the time we have to leave....
But our health insurance policy states that those with a pre-existing condition must be hospital-free for 90 days prior to departure day.  Once Tyson is well again and we are home, I will contact the insurance company to see if they will still cover Tyson because he was admitted for something unrelated to his heart condition.  Perhaps asking for a note from the pediatrician confirming this.  But who knows what they will say.  For now, we take one step at a time.  Get Tyson better and kick that pneumonia OUT!
Pneumonia, be gone!

The nurse on shift tonight just came in to give Tyson his ventolin mask and after he complied and hardly even acknowledged that she was there, she turned to me and said, "No child should ever have to be that comfortable with medical procedures."