Carry On.

I know it's been a while since I last posted (I knew promising to post once a month wasn't going to go as planned!) so please accept two posts on the same day. First off, the one I should have written over a month ago...

April 12th, 2013

Today was a Sick Kids day! I remember reading something when Charlie was first diagnosed about how it helps kids if you are excited (like, Disney-excited) about going to the hospital. We decided to try that with Charlie, hopefully making the whole experience a little less stressful. Needless to say, it is very difficult to pretend that going to the children's hospital is fun, but off we went, singing songs in the car and clapping about all the 'old friends' we got to see - Kristen, Judith, Louise - oh my goodness!
Charlie had a scheduled, sedated 7am echo and once that was over, we had visits with our cardiologist (Good ol' Dr.D.), our dietitian (who I speak to on the phone, weekly, but never see) and our genetic counselor (to discuss the possible planning of future children!). We arrived early ('better early then late' is our motto!) and sat around for a bit in Tim Horton's, waiting for 6:50am. We went up, they knocked him out, and did the echo. They had to put a little oxygen mask on him because he wasn't SAT-ing enough, but other then that (which I guess is common?), no complications.

Out like a light.

When we woke up, he was an angry, drunk little bugger. He wanted to sit up, but he couldn't. He wanted to stand, but fell over. He did NOT want to lay down, but that's pretty much all he could do. Matt and I laughed behind our hands at him, but felt sorry at the same time. He was like that guy who's had too much to drink at a party but is all, "Ohhhhh I'm FINE. Gimme ma car keys, I gotta go hooooommmmmeeee.". Poor dude. He just wanted to MOVE, so Matt walked around with him while I got to sit and chat with the adults.

"I'm naht drunk...just gimme ma keys..."

Dr. D. and Kristen were pleased with his results. Dr. D. said she didn't want us to think his heart was normal (who would think that?!) but that it was definitely improved. I asked Kristen after for his Ejection Fraction number - at last check it was 22% and we were hoping for 30% - and it was 38%! We were so pleased (although they tell you 'not to focus on that number', it's often indicative of how the heart is doing). The Sick Kids staff was pleased too, which is telling.

The meeting with the genetic counselor went well, as did the meeting with the dietitian  we had a lunch out and were home by nap time! Overall, a great day at the hospital - not quite Disney but still pretty good. :)

Carry On - 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

Oooh.

Oooh

Oooh

Oooh

(No one's ever gonna stop us tonight)

(No one's ever, no one's ever gonna stop, no one's ever gonna stop us tonight)

(No one's ever, no one's ever gonna stop, no one's ever gonna stop, no one's ever gonna stop us tonight)

I hate everything about you

What a stupid, corny, terrible song for my title today. But it's true when referring to DCM. I hate it. I can't believe I hate something so much that, 5 weeks ago, I had never heard of. The entomology of the word is: dilated (enlarged), cardio (heart), myo (muscle) pathy (disease). Ah, so there you have it! It's just a regular old enlarged heart muscle disease your child has. Plain as the nose on your face. I hate it, more then I ever thought I could hate something. I remember one of my grade-school teachers telling us we didn't hate anything, because 'hate' meant that you'd want to kill it. Yup, turns out 'hate' is just the right word for how I feel.

Today was a weird one. Charlie barfed this morning - a hot, upset-boy barf that wasn't fun for anyone. We had to drive for 2 hours, right after, to get to our appointment at Sick Kids. Charlie had blood taken and screamed but got over it quickly, so I see it as a success. We headed up to Cardio and fed him, and then saw Judith, one of our NPs. She's amazing. We weighed him (14lbs, 6.5 oz!) and took his pulse and blood pressure (both normal, hurray!). He hadn't had a nap yet and was getting pretty schitzy. My dad came with me today (Matt is saving his sick days in case of worst-case-senario stuff), so Dad took him while I spoke to Judith. Coles Notes version of that meeting: she showed us an x-ray of Charlie's heart and it's touching his ribcage on the one side. She said he's doing well considering his circumstances. Then, I asked a question. Sometimes I wish there was no Google and I wasn't so damn curious and inquisitive and research oriented.

Sometimes I wish I didn't need so much hope to survive this.

I asked her if we could have a specific number for his ejection fraction. I am an A-type personality and I need numbers to prove that he's getting better. When we first checked into the hospital, his EF was 'about 10%'. Now, they never gave us a specific number, so we have no comparison point. However, working with 'about 10%', his echo results from last week showed an EF of 17%. I had to ask to find this out, though, and Judith quelled my hope somewhat by saying that when an EF is under 20%, it can go up and down and that it's not stable. However, it is 'kind of' good news that it had slightly gone up.

I am struggling with this. I don't want to be too optimistic or too pessimistic, and it's impossible to find the balance between the two when you had to a)ask for the information and b)don't completely understand the information given. I don't want to have my hopes dashed at the next echo (two months away) and yet I don't want to see this as a non-moment. I just feel, in my soul, that this is good news. "Creeping upwards, never failing..." (Sidenote - isn't there a poem about that?). I just can't think that it's all bad news. So I am taking this as good news, for now.

I hate everything about you - Three Days Grace

Every time we lie awake
After every hit we take
Every feeling that I get
But I haven’t missed you yet

Every roommate kept awake
By every sigh and scream we make
All the feelings that I get
But I still don’t miss you yet

Only when I stop to think about it

I hate everything about you
Why do I love you
I hate everything about you
Why do I love you

Every time we lie awake
After every hit we take
Every feeling that I get
But I haven’t missed you yet

Only when I stop to think about it

I hate everything about you
Why do I love you
I hate everything about you
Why do I love you

Only when I stop to think
About you, I know
Only when you stop to think
About me, do you know

I hate everything about you
Why do I love you
You hate everything about me
Why do you love me

I hate
You hate
I hate
You love me

I hate everything about you