"What do you mean, normal?"

regular
[reg-yuh-ler]
adjective
1.usual; normal; customary: to put something in its regular place.

Last Friday, Elizabeth had her follow up echo at Sick Kids. I was concerned about how she'd do since they weren't sedating her and she is now a wiggly almost-four-month-old, but (of course), I needn't have been. It's become a running joke in our house how perfect a baby she is - she will actually tell you when she needs to sleep (growly sounds) or eat (whiny sounds). And other than that, she just quietly sits and obsess the world. She's amazing.

So, Sick Kids. We arrived, checked in, had her ECG done and headed into echo. It was fairly quick and she did well, laying there sucking her thumb and listening to me sing for most of it. Matt and I had a very interesting chat with the tech who was on exchange from Ethiopia. After, we waited over in good old 4A until Kristen came to get us.

Both Matt and I are pretty sure she tried to play it cool until we went into the room. I was super nervous and sat down, at which point Kristen says "So, her heart is normal." Matt and I just sat in stunned silence, to the point where Kristen says "Can I get a yahoo?". We were so bad at taking good news - bad news, we're experts. We immediately come up with questions and know what to say and do. Good news, we just sat there looking awkward and confused. I honestly said, "What do you mean, normal? Like, normal-normal?". Talk about PTSD.

But that's the news. Her heart, under the support of medication, is normal. Elizabeth will go back in 6 months for another echo and then perhaps go off the medication. Or not. Whatever.

It really made us think about Charlie and whether he would have done much better had he been diagnosed earlier. Surprisingly, that thought didn't make me bitter or angry...just food for thought. He was much sicker than Elizabeth from the get-go, though, so while he may have been better off than tube-in-the-nose, weeks-away-from-complications-including-death sick, I still think he would've been sicker.

Elizabeth and Charlie are joys and I'm glad we don't have to persevere through the mess we had with Charlie on the second time around. Thank goodness for Sick Kids and the great work they do.

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I need some sleep.

I know it's been a while since I posted. It's just that I've been so busy doing FUN things with Charlie (and some fun things for myself, too!). Life has improved dramatically of late.

So, the meat-and-potatoes first: the g-tube is working out well. I say 'well' and not 'beautifully' because it has yet to heal and that's frustrating, and there are always some growing pains with these kinds of things. It is much, much easier then the NG tube, though, and while we felt duped about the actual procedure itself (there were a lot of things no one told us), the real-life applications are incredible.

No longer do Charlie and I spend 4+ hours each and every day feeding through his tube. He now eats his formula overnight, and then just focuses on solids during the day. He is eating 1000+ calories on an average day, and 1100+ on a great one. We are calorie boosting everything with butter, but he is eating a good amount and our dietician is pleased with his progress so far. Once he was home, he really started to take off, eating and healing-wise. We've backtracked a little on the healing - the site has looked a bit gooey for the past few days - but it's looking better as of tonight and I'm hopeful for tomorrow.

Charlie started walking, and now is getting into everything. It is so. Much. Fun. And exhausting.

In other news: Charlie, my mum and I had a HUGE day today, and I am exhausted. Charlie is switching from one blood thinner (Enoxaparin) to another (Coumadin) so we had to go for a training/buying supplies/ informal nursing visit today. The only bad news is that the new drug makes his hurl if he takes it by mouth (it's super chalky). All of the good news: no more injections, one blood test every two weeks by the time we're level, it looks like our insurance company may cover the super expensive testing strips, and Charlie weighed in at 10kg.

Wait. What?

Do you like how I slipped that in there? Yes, after many months in the 9kg zone, Charlie is a porker at 22lbs or 10kg. Right on the button, too - 10.000. I was so pleased.

There's more but I'm too tired to write it. It boils down to I am enjoying Charlie's toddler phase and his new little personality, even if it is trying at times (my day: "Charlie, no. No. No. No. Mummy said no. No. No. NO! No. * sigh* No."). He is growing and changing and kissing everyone and enjoying life. It's wonderful. Goodnight.

I need some sleep - The Eels

I need some sleep
It can't go on like this
I tried counting sheep
But there's one I always miss
Everyone says I'm getting down too low
Everyone says you just gotta let it go
You just gotta let it go
You just gotta let it go
I need some sleep
Time to put the old horse down
I'm in too deep
And the wheels keep spinning 'round
Everyone says I'm getting' down too low
Everyone says you just gotta let it go
You just gotta let it go
You just gotta let it go
You just gotta let it go

 

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

Adventures

The great thing about a really shitty week is that when things start to go well again, you really have to notice. My arm is better, dad is ok, Charlie is fine and my brother is recovering. Can't get much better then that.

The updates:

My arm is OK. It turns out I had ligament damage and some muscle strain, but with a little physio I'll be OK in time. It aches constantly, especially at night, and I wonder if that will ever go away. I'm sure it will, again, in time.

Dad is fine, a little sore, but fine. They 'got' all the cancer, so he's back to his old self.

My brother is recovering. He's in a lot of pain (3 brain surgeries in 4 weeks will do that to do) but other then that, he's recovering nicely. He's home (thanks goodness - he was starting to lose it in the hospital) and healing until the doting and watchful eye of my mother.

Charlie! Charlie is great. We tried a few 'tube-free' days last week to see if he would suddenly, start magically eating more and drinking, but to no avail. He couldn't keep much down (I think he eats too fast) and we were worried about him getting dehydrated, so back in the tube went.

We went from this:

To this:

Really, the experiment just let Matt and I know know two things: yes, Charlie really does need the g-tube and no, it is not forever. He clearly likes to eat, and just needs to learn how - how to know he is hungry or full, how to eat at a reasonable pace, etc. He's doing really well with textures these days (eating bit of cheese puffs, croissant, bread) but its just not enough. In time, though, he'll come around.

What an adventure this month was! May 29th, we'll start a new one.

The Adventure - Angels & Airwaves

I wanna have the same last dream again,


the one where I wake up and I'm alive.
Just as the four walls close me within,
my eyes are opened up with pure sunlight.
I'm the first to know,
my dearest friends,
even if your hope has burned with time,
anything that's dead shall be re-grown,
and your vicious pain, your warning sign,
you will be fine.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Any type of love - it will be shown,
like every single tree reach for the sky.
If you're gonna fall,
I'll let you know,
that I will pick you up
like you for I,
I felt this thing,
I can't replace.
Where everyone was working for this goal.
Where all the children left without a trace,
only to come back, as pure as gold,
To recite this all.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
Hey, oh, here I am (do this with me),
and here we go, life's waiting to begin (do this with me).
Hey, oh, here I am (do this with me).

The Rainbow Connection

Ug. Blogger made the switch. This is so much more difficult on the iPad now. *Update: bought Blogsy. Am a real blogger now. Much easier from iPad. :D*

Anyways...things have improved since the last post - most things, anyways. We'll begin with the negative...

My brothers surgery, although successful in relieving the pressure on his brain, did not produce the biopsy of the tumour they were hoping for. He spent a week in hospital before being discharged for the weekend, and checked back in last Monday. His neurosurgeon really wanted a sample of the tumour, so they scheduled James for another surgery this past week. The sample of the tumour was recovered, but because of the second surgery, the pressure on his brain increased again, and now they have to put in a shunt. You can read more about this procedure here, if you're interested. So, a third surgery is imminent and my poor brother is bored out of his tree, sitting in a too-small hospital bed for his 6' 4" frame (Mum and I are on that one, don't worry). We are all visiting as much as we can, but for the most part he is just laying, watching tv, staring at the ceiling, and waiting.

So that's the bad news. Not really bad news, as a shunt is a fairly permanent solution to his issue, and the biopsy results have not been returned yet. We are all waiting on pins and needles for those.

The good news:

1. Dad recovered from HIS surgery just fine.

2. Turns out my arm wasn't broken, just a severe sprain with some ligament damage. Because I had it in a sling for so long, it's healed a bit...short, so I can't extend my arm. It aches constantly, so I start physiotherapy this week.

3. Charlie got used to not having me pick him up, and all of the super-helpful guests we had through the house.

4. Charlie's doing great, walking, CRAWLING, and getting into everything.

5. We got a date for Charlie's g-tube. You can read more about g-tubes here, if you're so inclined. We make the Big Switch on May 29th. I still don't know if it's for the best, but it will hopefully be easier and hopefully not permanent. This makes May a very busy month, with meetings at Sick Kids, prepping us in different ways.

6. We are getting our basement finished. Hurray!

It's been an exhausting two weeks. It's not even over for my mum yet, who is driving down to see my brother almost every day. There is a small, growing light at the end of our Medical Week of Nightmares, though, and hopefully it's upon us by next week's entry.

The Rainbow Connection - Kermit the Frog

http://www.youtube.com/watch?v=jSFLZ-MzIhM&feature=youtube_gdata_player