Charlie's Blog

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

Friday, July 20, 2012

No more drama.

The last few weeks have been tough. Charlie hasn't really been 'well' since we left the hospital post-g-tube - he always seems to have a fever or be lethargic or vomiting. We have made a few trips to emergency departments - once down to Sick Kids because we thought his side look distended (a sure sign of fluid retention) and once because of his 39.9C fever. Then, early Tuesday morning, things to a turn for a worst.

I heard him around 2:45 quietly whining to himself. This is SO unlike him - he's usually asleep or screaming for me to come in and snuggle. He is not generally whiny. But there he was, on the monitor, whining away. Quietly. To himself. I thought perhaps he had rolled on his g-tube, so I quietly went in, only to be greeted by a pair of wet eyes and outstretched arms. I picked him up and as I did so...saw vomit. Everywhere. With blood in it.

Yes, blood.

I put Charlie down, went and got Matt (who was sleeping with the fan on and wouldn't have been able to hear me had I called) and by the time I got back, Charlie was vomiting MORE (how the child even had any more in his tummy is beyond me, and the realm of science) and panicking in his crib. I held him as he threw up and then went into uber-mom mode. I detached him from his pump, carried him to our room, ran a warn bath and got in the bath with him. By this point, Charlie was so entertained by the fact Mummy and he were getting in the bath in our CLOTHES he forgot about being upset.

Matt called the cardiologist on-call, who eventually directed us down to Sick Kids. I say 'eventually' because he was just a fellow (cardiologist in training) and he had to call the real cardiologist to consult before he could tell us to come. By the time he called us back, we were packed for an overnight and at the door, waiting. We would have been going whether or not he called back.

I set the cruise at 120 km/h and we sailed down to Toronto. There isn't a lot of traffic at 4am. It's lovely.

From there, things were pretty efficient, although I had to get all Mama Bear on the emergency nurses. They were trying to put in an IV into Charlie's very dehydrated, 'flat' veins and couldn't get it in. The poor kid would cry every time they poked him, and then fall asleep between attempts. After two tries, I asked WHY they were putting in an IV. They told me it was 'just in case' he needed fluids later. So, I told them he wouldn't be getting an IV unless he actually needed one, and they could just find someone who KNEW WHAT THEY WERE DOING for the blood draw.

Charlie didn't get an IV, and they found the Vampire Nurse who got blood from his arm, no problem. :S

We ended up spending the night there (so, from 5am Tuesday to noon on Wednesday) but all of Charlie's cultures came back negative. It's been deemed a 'virus' (thanks, specific doctors!) and we're just to ride it out. We also got some of his g-tube healing issues worked out while there, and we also met the new cardiologist follow from Singapore who is LOVELY, and took the time to explain to us how Charlie's Ejection Fraction is measured. We really appreciated his candor and kindness, and the fact he didn't assume we were stupid.

We also found out while there that Charlie's BNP (a hormone variant that informs heart failure) is now in the NORMAL levels. Amazing. It's 72, which is great for someone who has been in heart failure before. When we were admitted last August it was 1100. :(

So, that's the news. I am ready for some major regular-ness. Eating, normal days, healing arms and elbows, and no more drama. Please.

No More Drama - Mary J. Blige

So tired

Tired of all this drama

You go your way

I go my way (no more no more no more)

I wanna be free

(singin)

Broken heart again

Another lesson learned

You better know your friends

Or else you will get burned

Gotta count on me

Cuz i can garuntee that i'll be fine

No more

No more pain (no more pain)

No more pain (no more pain)

No drama, no more in my life (no more drama in my life no ones gonna make me hurt again)

Why'd i play the fool

Go through ups n downs

Knowing all the time

You wouldn't be around

Or maybe i liked the stress

Cuz i was young n restless

But that was long ago

I don't wanna cry no more

No more pain (no more pain x2 )

No more game (no more games messin with my mind)

No drama (no more drama in my life no ones gonna make me hurt again, no more~)

No more tears (no more tears i'm tired of cryin every nite)

No more fears (no more fears i really don't wanna cry)

No drama (no more drama in my life i don't ever wanna hurt again)

Wanna speak ma mind wanna speak ma mind

Uhhhh it feels so good

When you let go

Of all the drama in your life

Now you're free from all the pain

Free from all the games

Free from all the stress

So find your happiness

I don't know

Only god knows where the story ends for me

But i know where the story begins

Its up to us to choose

Whether we win or lose

And i choose to win

Ohhhh...

No more pain (no more~, tired)

No more game (no more games i'm tired, i'm so tired)

No drama (no more x7)

Background Singers : (No More Drama) x4

MJB:NO More

I'm tired of all this drama

Go 'head go 'head

U demons getting out of my face

Go get out of my life

I'm about to lose my mind

NO.....

Help me help me sing

Choir : (NO MORE DRAMA) x6

MJB: No More Drama

No more, no more, uhh. Yeah~

No more, no more drama

Ohh help me sing

I need a (peace of mind x3)

Yeah i need

Hide but nicely i need to know that u r free

Oh nox2

No morex2

No more dramax2

In my in my... life.

Monday, July 9, 2012

I feel better. (maybe not Matt, though)

 
In the interest of multitasking, I decided to write a blog entry while on the elliptical today. I am using Dragon dictation which is my new favorite app. Or so please forgive any minor grammar or spelling issues it may make.

Charlie has been doing well as of late. Matt and I had a rough day last weekend when we ended up taking Charlie to the emergency ward because he his right side looked slightly distended. He wasn't eating any solid, and he wasn't his normal cheerful self. We call the cardiologist on call, and she thought it was a good idea to bring him in. Long story short after some blood work, his white cellcount was slightly high, leaving them to believe he did indeed have an ear infection. Afters some anti biotics, we are basically back to normal.

So now, Charlie is eating pretty well and getting into everything. He is walking everywhere, and is very busy boy. He is eating almost 1000 cal per day which, from my calculations is about 150 more than what he was eating prior to the G-tube.

We went to the splash pad yesterday with our friend Grayson. Both boys had a great time. Charlie didn't know what to do with himself going through a tube with water spraying in all directions. There are some very cute pictures of yesterday.

The other big news in our lives is that Matt broke his arm last week playing baseball. Honestly I don't know what else could go wrong this summer but I don't want to ask that question,lest it get answered. He may have to go to surgery today, and definitely will this week. He broke his elbow so badly that they have to put in a metal plate to help with the healing. Matt is being pretty pouty about the whole thing, mostly I think, because he can't hold Charlie.

Now, our planned vacation later in the summer is in jeopardy. Honestly, though, I am just glad Matt is okay, and Charlie is doing well. Really at this point, it's all we can ask for.

I feel better - Gotye

There was a time I was down, down

I didn't know what to do

I was just stumbling around, around

Thinking things could not improve

I couldn't look on the bright side

Of anything at all

That's when you gave me a call

Now I feel better, better, better than before

I feel better, better, better, now I'm not down any more

And there were times I was sure, so sure

I couldn't turn it around

I couldn't care any more

About the good things I found

That's when you gave me a reason

To make me smile again

I only have to see you and then

I feel better, better, better than before

I feel better, better, better, now I'm not down any more

I feel better, better, better than before

I feel better, better, better, now I'm not down any more

Life sometimes seems to get the best of you

Like everything just brings you down

Just when you think there's nothing you can do

A friendly face will bring you around

And you'll feel better

You'll feel better, you'll feel better,

Better than before

You'll feel better, much better