Charlie's Blog

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

Saturday, December 17, 2011

Two Steps Back

This has been the worst week yet, mostly because everything was going so well for so long. Perhaps this is a message from above? Some perspective?

Last Monday, Charlie woke up starving. He ate 100mLs of his 160mLs of hyper caloric formula - a big deal for someone who averages 42% of each bottle. At his 10am feed, he only ate 50mLs - fine, because that's about average for him. It would be like us eating cheesecake at every meal and being expected to finish it at every meal.

From there, everything fell apart.

Since then, he has had 300mLs by mouth TOTAL, over the next 5 days. He won't even let the bottle get near him, never mind in his mouth. He was running a light fever for a couple of days, he was being grumpy, having diarrhea, sleeping more and sleeping heavier. No one at the hospital seemed to think this was an issue - even though these changes took place, literally, overnight. On Friday, I emailed a list of concerns to our NPs, ho told me to bring him in 'if I wanted'. Well, geez, thanks for nothing. I didn't take him down, not because I wanted to give it the weekend just in case, as they think at the hospital, that he has a virus and that it'll pass. If he's not better by Monday - obviously on the mend - we are going down.

Our doctor-friend suggested it may be the fact we started yogurt and meat last weekend. I am hoping against hope that IS indeed the problem. We've cut out all solids for a couple of days, so hopefully that does the trick.

And that's the news from our world, suddenly plunged back into the depths of possible heart failure.

Two Steps Back - Craig David

You know I'm the kinda guy that does 9 to 5
Working real hard it's the way I live my life
Back home just me and you girl all alone
With no one interrupting
Switch off the phone
But I could be that other guy
Who comes home late night after night and tells you lies
So why are you trippin out, on me girl all the time
When every day it's only you that's on my mind oh

Every time we take one step forward
You take 2 steps back
Everytime it's right you bring left back (oh, oh)
Girl you really oughta think about it
Cuz there's really no doubt about it
You know I'm been there for you and that's the truth [x2]

You know you're the kinda girl that doesn't need to front
Keep it real, let me know just what you want
Sometimes I just don't know when to stop
You worry so much over nothing
You're just losing what you've got
Now can't you see there's no other girl
I think you're the most beautiful woman in this world
But you say I don't appreciate you
And I don't know how to treat you
We don't do the same thing we did no more


Remember it wasn't that long ago
You told me that you love me so
Don't forget all the nights we shared
When you told me girl how much you cared
It could be a little straight
But this is the way plays to play
I'm not that kinda man
Why can't you understand
Cause I
Want you to trust in me
Baby girl can't you see
You only gonna mess things up
You've done enough
Why can't you stop
(Cause) You're gonna lose what's good to you
And it's the last thing you wanna do
Won't find another like me, oohhh

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