Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Thursday, September 29, 2011

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

2 comments:

  1. I have a ton of sick days saved up if you ever need company :)

    ReplyDelete