A Big Day

I've started to think about the whole medical side of charlies life as its own, separate journey. If that's the analogy, today was a major turning point in that road. Charlie had an appointment at Sick Kids and, although still not normal, our airs-on-the-side of caution cardiologist, Dr. D., says 'His echo's looking WAY better!'.

Whoa.

So, let's tell this story chronologically. We decided rather than spend the 2+ hours in the car to get down to the city, we'd take Charlie on the train and subway. WHAT a great decision. Charlie had a great time, we were able to relax, and we got to the hospital in just over an hour. It's funny that we finally figured out the public transit option on what was ended up being the day we were discharged to once-a-year hospital visits.

We got down to the hospital, had a tea and went up to our appointment. We had our weigh in and BP done first with one of our lovely nurse practitioners, Kristen, who was so happy to see Charlie. But, seemingly bad news abounded: I wasn't happy with charlies weight gain initially (+400gms in 6 months) AND Kristen told us we weren't going to be able to switch to twice-a-day meds because Charlie wasn't 4 yet. I almost cried, since that was the ONE thing we were really hoping for at this appointment. I'm sure the disappointment was written all over my face (I haven't trouble hiding how I'm feeling!) because Matt took over the conversation. We were sent to echo.

Charlie did really well at his echo. He doesn't like having his blood pressure taken, so those were the only times he got whiny. Other than that, he did really well. We put on a Toopy & Binoo and he just laid there and let the overly-sweet tech get her pictures.

We reported back to ECG and Faith, the tech who did charlies initial ECG when he was diagnosed, happened to be with us again. Charlie did well and we reported to 'Room 8' for results.

At this point, matt and I were feeling anxious but also defeated. As far as we knew, we were sticking with the 11pm bedtimes AND dispite months of seeming to eat better, charlies weight wasn't anything to write home about.

Then, Dr. Dipchand and Kristen entered with big smiles, Dr. D. says 'So, his echo looks WAY better, you can go to meds twice a day, and we're taking him off the Warfarin. You also don't need to come back for a year!'. Matt and I sat in stunned silence for about 5 seconds, as Dr. D. and Kristen sat staring expectantly at us, smiling. Both looking at us with that 'Well...? Isn't that great?' eyebrows up look. Matt and I eventually got over our shock, and held it together until they left the room. At which point Matt turned to me for a happy hug and I started to weep.

Sometimes, being pregnant and overly emotional sucks.

We saw our genetic counsellor next (everything is still fine with Booboo, the fetus) and our dietician, who told us our final good news - that Charlie's weight gain was just fine for his growth curve.

In the end, this was by far the best clinic day we've had at Sick Kids. It's funny that we were hopeful, then crushed, then elated. We ran the gamut of emotions and diagnosises in about an hour. And Charlie's doing great. :)

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fun.

Apologies, apologies. The audience of this blog never ceases to amaze me. Now that a) Charlie is doing spectacularly well and b) I don't have an hour every night by myself in the dark, it's difficult to make time to write on here. I shall make a better effort, though. Monthly, at least?

The Thomas household is fine. It's great. It's wonderful! We are having so much fun around here these days. The DCM looms over us constantly (Matt and I are crazy, basically) but it's easy to forget about it on a daily, minute-to-minute basis when Charlie is doing so well. We have our moments - moments that are not normal for average parents (Charlie didn't gain enough wait last month, a friend from the hospital has been listed for her transplant - these things make us crazier) but generally, life is pretty good.

I remember when Charlie was first diagnosed, Matt saying that all the 'stuff' (meds, syringes, tubes, etc) would just become our 'new normal'. I was skeptical, but it did. I can't imagine NOT prepping Charlie's meds for the next 24 hours every day around 3pm, or NOT knowing my way around Sick Kids. It's strange. We were visiting friends of ours with a 18-mont old baby girl, and I went to change her diaper. I was - startled it the only word that fits - when I lifted up her shirt and there was no g-tube on her tummy. It was the weirdest feeling. I said aloud to her 'oh, what a nice tummy you have!' While she looked at me like I was nuts. Because I am, a little, I think. :)

Charlie has a sedate echo in April 12th. We'll get more real information then, but if his energy level is anything to judge by, he is doing just fine, enlarged heart or not. Case in point:

I am so, so glad we chose to have me home and with Charlie for these 2.5 years. I'm headed back to work in the fall - part time - and the closer it inches, the more I realize what a special time this has been. Library time, swimming lessons, baby yoga...and dance par-tees.

That's the non-news from around here. Thanks, as always, for reading.

Carry on, by fun.

Well I woke up to the sound of silence

And cries were cutting like knives in a fist fight

And I found you with a bottle of wine

Your head in the curtains

And heart like the Fourth of July

You swore and said,

"We are not,

We are not shining stars"

This I know,

I never said we are

Though I've never been through hell like that

I've closed enough windows to know you can never look back

If you're lost and alone

Or you're sinking like a stone

Carry on

May your past be the sound

Of your feet upon the ground

Carry on

Carry on, carry on

So I met up with some friends at the edge of the night

At a bar off 75

And we talked and talked about how our parents will die,

All our neighbours and wives

But I like to think I can cheat it all

To make up for the times I've been cheated on

And it's nice to know when I was left for dead

I was found and now I don't roam these streets

I am not the ghost you are to me

If you're lost and alone

Or you're sinking like a stone

Carry on

May your past be the sound

Of your feet upon the ground

Carry on

Whoa

My head is on fire but my legs are fine

After all they are mine

Lay your clothes down on the floor

Close the door, hold the phone

Show me how no one’s ever gonna stop us tonight

'Cause here we are

We are shining stars

We are invincible

We are who we are

On our darkest day

When we’re miles away

Sun will come

We will find our way home

If you're lost and alone

Or you're sinking like a stone

Carry on

May your past be the sound

Of your feet upon the ground

Carry on

 

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Donate.

I know it's been a while. Suffice it to say that Charlie's g-tube makes us happier by the day, he is doing very well, and generally things are great. I went away this past weekend and saw some friends (sans Charlie) and am feeling recharged.

Cheating, I give you videos instead of writing:

Farm animals.

Giggles.

Walking.

Reasons to donate.

How to donate.

Enjoy.

Home.

We are finally, thankfully, restfully home. Our 48 - 72 hour recovery time turned into 6 days in the hospital - longer then our original stay when Charlie was diagnosed. He had setback after setback, albeit minor ones, and every day just dragged out to the eventual conclusion that meant another stay. It got very tedious by the end.

Tuesday was probably the easier, Charlie-wise. We got to the hospital early, as expected, and had a nice relaxing tea while we waited to be admitted. Then, we were taken to the step-down room in the cardiac ward, and from there it was vitals, transport, and by 11:00am we were in pre-op. we waited there for what seemed like FOREVER (they were having trouble locating the pediatric cardiac anesthesiologist, so we were happy to wait for him!). They finally look him around noon. Charlie had already fallen asleep on his own, so they just out the sedative through his NG tube and away he went. We got some lunch and went to wait.

It really seemed like no time at all before they were coming to get us to see him! We only apart for about an hour and a half, but I thought the time would drag. I guess we had good distractions (iPad, crazy people in the waiting area).

So, he was still asleep when we saw him (which was awesome; I had been having dreams of him waking up, and not seeing us (well, me, really) and freaking out). He woke up slowly and was fine, initially. We were taken back up to cardiac (4D) and he spent the rest of the day sleeping, kind of waking up and crying because he was thirsty. I started (without nurses permission, but whatever) giving him wet facecloths to suck on. It was pretty sad.

On Wednesday, things turn a turn. Charlie started getting a fever and turning red and flushed. By the afternoon, his fever leaked at 103.5F (with tylenol) and he was waking up from his many naps shaking and screaming. It was really scary. We had a lot of nurse and doctor visits, but ultimately we had to just let it run it's course. His fever broke over night and he was getting better by Thursday. He also pulled out his NG tube that day, negating any dreams I had of having a 'no more NG tube!' party.

Sick. :(

From there, the next four days pretty much went like this each day: wake up, eat, sleep, wake up, eat, barf, sleep, wake up, have slightly less, play, sleep, eat, sleep. Notice: no poops, and barfs - neither of which were good things. His little system took forever to gear up. But on Monday, finally, he started pooping normally without...ahem...'assistance'...and keeping down most of his feeds.

Awaiting the poop fairly.

There is occasionally a real lack of common sense in the medical profession. For example: Charlie used to throw up all the time, and only stopped when we started cruising during feeds. Makes sense, right? We're dumping in formula to his tummy, and after a certain amount, if he's not using it, he's losing it. When he started cruising, he started using it. Well, at the hospital, he was sitting for entire feeds (because where are you going to cruise around in your hospital room?) and not moving much between feeds, either. Also, he's had less in 4 days then he would have had in ONE at home, AND he went 72 hours without a thing in his tummy. OF COURSE he is going to throw up for a while while his tummy recovers its previous size, and while he heals and recovers from the surgery itself. Duh!

So, when the doctor who didn't know Charlie said that because he threw up, we may need to stay one...more...night...I literally laughed. I would have just left without being discharged! After explaining the situation to him, though, and getting him to talk to our team, he 'was willing to let us go'. Geeeee, thanks. :S

We were so lucky in the hospital to have good friends and family visit and (more importantly), bring FOOD! We were at the hospital for 6 days and we only bought ONE dinner. Amazing. Thank you to everyone who visited, or sent food, or even just Facebooked or emailed with words of encouragement. That made it much easier.

Ready to go with our new bravery beads!

So, we are home. Charlie is willingly wearing his backpack and being pumped while cruising, and I'm thrilled he's not complaining about it. :) I'm ready to start trying new schedules, but I don't think Charlie is. Hopefully, once we've been back on the old schedule for a week, we'll get going on something new, and easier. Library classes at 11am, here we come! :)

Home - Michael Buble

Another summer day

Has come and gone away
In Paris and Rome
But I wanna go home
Mmmmmmmm
May be surrounded by
A million people I
Still feel all alone
I just wanna go home
Oh, I miss you, you know
And I’ve been keeping all the letters that I wrote to you
Each one a line or two
“I’m fine baby, how are you?”
Well I would send them but I know that it’s just not enough
My words were cold and flat
And you deserve more than that
Another aeroplane
Another sunny place
I’m lucky, I know
But I wanna go home
Mmmm, I’ve got to go home
Let me go home
I’m just too far from where you are
I wanna come home
And I feel just like I’m living someone else’s life
It’s like I just stepped outside
When everything was going right
And I know just why you could not
Come along with me
'Cause this was not your dream
But you always believed in me
Another winter day has come
And gone away
In even Paris and Rome
And I wanna go home
Let me go home
And I’m surrounded by
A million people I
Still feel all alone
Oh, let me go home
Oh, I miss you, you know
Let me go home
I’ve had my run
Baby, I’m done
I gotta go home
Let me go home
It will all be all right
I’ll be home tonight
I’m coming back home

Adventures

The great thing about a really shitty week is that when things start to go well again, you really have to notice. My arm is better, dad is ok, Charlie is fine and my brother is recovering. Can't get much better then that.

The updates:

My arm is OK. It turns out I had ligament damage and some muscle strain, but with a little physio I'll be OK in time. It aches constantly, especially at night, and I wonder if that will ever go away. I'm sure it will, again, in time.

Dad is fine, a little sore, but fine. They 'got' all the cancer, so he's back to his old self.

My brother is recovering. He's in a lot of pain (3 brain surgeries in 4 weeks will do that to do) but other then that, he's recovering nicely. He's home (thanks goodness - he was starting to lose it in the hospital) and healing until the doting and watchful eye of my mother.

Charlie! Charlie is great. We tried a few 'tube-free' days last week to see if he would suddenly, start magically eating more and drinking, but to no avail. He couldn't keep much down (I think he eats too fast) and we were worried about him getting dehydrated, so back in the tube went.

We went from this:

To this:

Really, the experiment just let Matt and I know know two things: yes, Charlie really does need the g-tube and no, it is not forever. He clearly likes to eat, and just needs to learn how - how to know he is hungry or full, how to eat at a reasonable pace, etc. He's doing really well with textures these days (eating bit of cheese puffs, croissant, bread) but its just not enough. In time, though, he'll come around.

What an adventure this month was! May 29th, we'll start a new one.

The Adventure - Angels & Airwaves

I wanna have the same last dream again,


the one where I wake up and I'm alive.
Just as the four walls close me within,
my eyes are opened up with pure sunlight.
I'm the first to know,
my dearest friends,
even if your hope has burned with time,
anything that's dead shall be re-grown,
and your vicious pain, your warning sign,
you will be fine.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Any type of love - it will be shown,
like every single tree reach for the sky.
If you're gonna fall,
I'll let you know,
that I will pick you up
like you for I,
I felt this thing,
I can't replace.
Where everyone was working for this goal.
Where all the children left without a trace,
only to come back, as pure as gold,
To recite this all.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
Hey, oh, here I am (do this with me),
and here we go, life's waiting to begin (do this with me).
Hey, oh, here I am (do this with me).

I'm making a list...

This week's title is based on a wonderful if completely unknown song by a guy I knew in university. He had a talent for making songs that all sounded kind of the same, but his lyrics were wonderful. His songs were your typical university-dude song, full of heartbreak, in-jokes and mentions of places and people only others at the university would 'get'. I don't think he makes music anymore, but I don't know. I can't find him on Facebook - plus, I don't think he liked me much. He probably wouldn't 'friend' me back.

Anyways. Charlie.

Charlie has done a LOT of barfing over the past few days. He's come down with another bug, and has slept a lot, cried a lot and, yep, barfed a lot. He's become very sensitive to anything barf-inducing - I cleaned the bathroom the other day, and the smell of the cleaner made him barf! At least, that's what I think it was...you never know with babies, 'cause, y'know, they don't talk.

The poor child has barfed everywhere. In his bed. In our bathroom sink. On our (fucking carpeted) stair landing. On the hardwood. And in his new 'barf bucket' (which is really just a reclaimed Tupperware that we lost the lid to) which is great, because it doubles as a toy when it's not filled with barf. Seriously - he says 'dada' into it over and over again, and thinks the mini-echo is hilarious.

We are hoping he is on the mend. He has been sleeping a lot, and he slept less today, he was less cry-ee today, and he hasn't barfed since his 10am feed this morning. I am ever hopeful. We did, however, cancel 'Matt and Kris's Supervowl Extravaganza' for Sunday, because the last thing this kid needs right now is more baby germs. Kids are carriers, man - grubby little germ-ridden carriers. As much as I wanted to see the babies and, of course, their parents, keeping Charlie well is more important. Damn it.

Like I said, I'm making a list. Of everything Charlie does that is really, really funny. It might just be funny to me, or Matt, or our parents, or his aunt and uncle...but that's enough of the people who read this blog to make a list of them. So here it is. Enjoy.

And if you can, if you're ever in western Canada (I think he was Albertan, for some reason), and you're at some hip little coffee house or see a poster for James Kent, go to his concert. Even if you don't get the in-jokes, you'll appreciate the lyrics.

I'm making a list...

1. Now that he's scooching, Charlie looks at something and goes. For. It. He gets this really determined look on his face and just goes.

http://youtu.be/Nx-uNgrh_SA

2. He has a stink face. He often makes it as or after he's pooed.









3. He sticks out his tongue and attempts to lick mine if I stick it out first.















4. When I put my hair in his face, and grabs it with both hands and sticks as much as he can in his mouth. Both of us get very wet. But it's pretty funny.
5. He tries to sing when I sing. So far, no awards.
6. He likes to hump the air with his diaper off.
7. When people clap on tv, Charlie claps too, like he is part of the studio audience.

http://youtu.be/smhPiQERbpA

8. On numerous occasions, although not recently, he has tried to pick my freckles off. Diligently.
9. He likes to march, although he can't stand on his own of walk yet. He has marched since he was 4 months old.

http://youtu.be/8CjM1k4mwjo

10. Lastly, Charlie has various looks. He has a bored look, a 'you've-got-to-be-kidding-me' look, a happy look, a pouty look, a stink face look...all of which are hilarious. I wonder if it's damaging that we laugh at him so much...

I'm making a list - James Kent

I'm making a list of everything I miss
I'll send it to you
I'll send it to you
I'm writing a list of everything I miss
I'll send it to you
I'll send it to you
And on it wil be the souveniers we bought each other at the ROM
Where you worked in the summer
And on it will be
Those drives in my parents car
Blasting OK-GO on the stereo
And on it will be
Our trip to Drumheller, dinner at Pete's Drive-In, and the Baskin-Robbins
And the best of all, but not least of, on it will be you

I'm writing a list of everything I don't miss
I'll keep it for me
I'll keep it for me
I'm writing a list of everything I don't miss
I'll keep it for me
I'll keep it for me
And on it will be 15-minute Simon Says on those cold nights
When I walked you home
And on it will be
Those times when you woulnd't say what was bothering you
But I knew it was me
And on it will be
All the mistakes I've made
I'll write them on a page, and tear it up
And on it will be
Feeling guilty for three years

I'm writing a list of everything I miss
I'll send it to you
I'll send it to you
I'll send it to you

Charlie's happy heart?

I know, it's a weird title for a blog about a boy with a heart disease. I struggled over what to name the blog, and in the end decided on 'Charlie's Happy Heart' because he really does have a happy heart in the truest sense. He is a happy boy. The nurses and doctors at Sick Kids have told us time and time again that they have seen children with better heart function who are doing much, much worse. Matt and I love Andy William's song 'Happy Heart' (lyrics at bottom) and it's just such a fitting tribute to Charlie's daily demeanour.

For those of you just joining this party, Charlie (my 6 month old son) stopped eating well at around 4 months. He went to a paediatrician who misdiagnosed Charlie's condition 4 times before, after a night of endless coughing and crying and inability to catch his breath, we packed up the car for the Big Drive into the City, and took him to the hospital. It just so happens we live near-ish to the best children's hospital in Canada, one of the best in the world.

There, they did a simple chest x-ray (that's all it took, folks!) and fairly immediately admitted us and diagnosed Charlie with Dilated Cardiomyopathy. DCM is a disease that, for Charlie, affects his left ventricle, which does not pump efficiently. An average 'ejection fraction' (the amount of blood you take in versus what your heart can pump out) is about 60% - Charlie's is about 10%. It was a scary, scary day, and one I'm sure you'll hear about in upcoming posts.

That was three weeks ago. Since then, Charlie has been put on a protocol of 4 different drugs, which he may or may not be responding to. It's unfortunately too early to tell is anything is making a difference. He has an echocardiogram (echo) scheduled for Friday, when we may or may not learn more. He has a nasogastric feeding tube (NG tube) and gets some of each of his feeds through it (he becomes too tired to eat, or too uncomfortable, and refuses about half of each bottle). He is a charmer, a flirt, and fairly intelligent from what we can tell. He is meeting his developmental milestones at the late end of normal (we'll take it!) and we love him, love him, love him.

Thanks for reading this first post. I'll post about good days, bad days and exciting trips to the hospital. It's just my way of sharing this adventure.

Happy Heart, by Andy Williams

There's a certain sound always follows me around
When you're close to me you will hear it
It's the sound that lovers hear when they discover
There could be no other for their love

CHORUS
It's my happy heart you hear
Singing loud and singing clear
And it's all because you're near me, my love
Take my happy heart away
Let me love you night and day
In your arms I wanna stay, oh my love

Feeling more and more like I've never felt before
You have changed my life so completely
Music fills my soul now, I've lost all control now
I'm not half, I'm whole now with your love