Charlie's Blog

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

Tuesday, June 5, 2012


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
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

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