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.

Posted with Blogsy

Home.

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
Mmmmmmmm
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

I'm so tired.

Who knew there was a song - a Beatles song, at that - that had the perfect title for how I'm feeling right now?

The day-to-day drudgery that is Charlie's schedule is getting to me today. I didn't even have anything else do to - its not like I wanted to go out and couldn't because of a barf or a nap. I'm just realizing, slowly, how long a battle this is going to be.

Charlie (and thus, I) spend 4 hours a day, minimum, 'on the drip' (his NG tube/ gravity set). We sit from 6-7am, 10-11am, 2-3pm and 6-7pm). Then, I sit, alone with my iPad, from 10-11:30pm, dripping in the final feed. This time does not include getting his solids into him three times per day, right before these structured feeding times. I have been doing this with Charlie since August. Every. Single. Day. I make an effort to get out of the house from 3-4:30pm, because we have to be home by 5pm for medication. I like structure and I know it's good for Charlie, but this is definitely too much of a good thing.

Lately, and I don't know if I'm getting sick or what, but I have just been so frustrated with...everything. I have a smidge of a sore throat and I'm finding it really difficult to wake up from my morning nap. I'm feeling run down and a bit sad again, and I don't know why. Charlie is progressing well, walking and moving around, and usually happy. I really think I am just tired. Soul-tired.

Today was not a great day. Charlie is recovering from his vaccines last week, and the MMR shot has affected both his mood and his ability to keep food down this week. Today, he threw up half of his morning feed, and then his solids at 2pm (fairly rare for him to throw up solids). Then, he would have kept down his 2pm bottle, but he decided a navy blue thread on the carpet looked delicious, and so in his mouth it went. Of course, this elicited a barf. I was so mad. The rest of the day was fine, but I really don't think Matt can understand how tired I actually am, all he time. I am hoping tomorrow is a better day.

It'll have to be a better day, because I get a night out! I am going out with my sister-in-law tomorrow night to see Gotye. If you haven't heard this song yet, give 'er a go. It's great. We get to have dinner out too! There is nothing I like better then dinner downtown at a brewery. :) I intend on imbibing a little. I am being driven home.

If we look at the positives today, it could have been worse. We switched out Charlie's tube, which becomes better every time. He did keep down more then he was before we altered his feeding amounts (rather then doing 5x175 mLs, we now do various amounts depending on the time of day - less in the morning, more at night). He was in an ok mood for most of the day. Super chatty.

That said, I honestly hope he's an asshole tomorrow night while I am out. It is so unfair that I get all the bad moods. ;)

I'm so tired - The Beatles

I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink
I wonder, should I get up and fix myself a drink?
No no no

I'm so tired, I don't know what to do
I'm so tired, my mind is set on you
I wonder, should I call you? But I know what you would do

You'd say I'm putting you on, but it's no joke
It's doing me harm, you know I can't sleep
I can't stop my brain, you know it's three weeks
I'm going insane

You know I'd give you everything I've got
For a little peace of mind

I'm so tired, I'm feeling so upset
Although I'm so tired, I'll have another cigarette
And curse Sir Walter Raleigh
He was such a stupid get

You'd say I'm putting you on, but it's no joke
It's doing me harm, you know I can't sleep
I can't stop my brain, you know it's three weeks
I'm going insane

You know I'd give you everything I've got
For a little peace of mind
I'll give you everything I've got
For a little peace of mind
I'll give you everything I've got
For a little peace of mind

Good day sunshine

I'm sitting at our dining room table, relaxing with a cup of tea with the oldies station on, while Charlie sleeps and Matt reads a book. All very idyllic, if my thoughts weren't consumed by DCM and the constant worry that entails. I am trying to enjoy these moments, I really am.

Yesterday was a great day. Charlie ate a lot out of each bottle, ate all (!) of his cereal, and didn't barf. He hadn't barfed in a week! This was a new record for us. I should have known it was all going to go to shit the next day. I will say, though, that I am getting better at taking it day-by-day - I really did enjoy the good day while it lasted. I went to bed last night feeling at peace.

This morning, Charlie was still ok. Then, he didn't want his 11am bottle nor his cereal (he took two spoonfuls before making the adorable 'no thanks' face (posted below - you know that phrase about 'a thousand words'?). Then, he barfed. A small one, but still - I become so hopeful that he's going to keep everything down and use those calories. Once I got over the initial clean-up, though (this one didn't even require a change of clothes on either of our parts!), I realized that there were other reasons he might have gotten sick, including the tube going too fast, or the water we use to syringe the NG tube afterwards might have been to fast, or too cold, or both. In any case, his 3pm feed went well and the nurse who visited today says he's doing fine.

It's hard to take the good days with the bad ones. Obviously, I just want every day to be good, and maybe one day we'll get there. For now, though, I am willing to take the good ones with the bad no matter how hard it is - at least he is having good days! The first lyric of the below really speaks to me: "I need to laugh..."

**The 'no thanks face' is not a recent picture, so here are TWO pictures for your viewing pleasure - the second is our recent apple-picking adventure.**

"No thanks!"

Happy apple picker?

Good Day Sunshine - The Beatles

Good day sunshine
Good day sunshine
Good day sunshine

I need to laugh, and when the sun is out
I've got something I can laugh about
I feel good, in a special way
I'm in love and it's a sunny day

Good day sunshine
Good day sunshine
Good day sunshine

We take a walk, the sun is shining down
Burns my feet as they touch the ground

Good day sunshine
Good day sunshine
Good day sunshine

Then we lie beneath a shady tree
I love her and she's loving me
She feels good, she know she's looking fine
I'm so proud to know that she is mine

Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine
Good day sunshine