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

 

One Week *Updated*

If I ever have a week worse then this one, I won't be doing this blog anymore. Honestly. I feel like I have become one of those whiny people - I work with a woman like this - where everything is wrong, all the time. Only this week, it's true! Forgive my whining and indulge me, will you?

Monday: my younger (27!) brother is diagnosed with a brain tumour.

Tuesday: my dad goes in for prostate cancer surgery.

Wendesday: I go visit my dad in hospital, and am told that my brother will be in a different hospital the next day for BRAIN SURGERY.

Thursday: Brain surgery day. More hospital. Jamie comes out of it fine, but they were unable to biopsy the tumour, so the future is hazy as to a plan. :(

Thursday late/ Friday early: Charlie, teething, is up from 2am - 4am. Matt stays up with him and then is too wired to go to sleep for an hour before we leave for the hospital. Matt functions almost all day on 4 hours of sleep.

Friday: trip to our hospital for an echo day with Charlie. We were excited about said echo because at last check, he was doing so well, remember? Well, it turns out that he really wasn't doing all THAT much better, and today's results were exactly the same. There were 'indications of possible progress' in January, but that progress didn't happen. He is still on a blood thinner, the coming-off which was the Great Hope.

Friday, also: our genetics FINALLY came back (a 'two to three month wait' that was 7 months long) and although there was only a 30% chance of finding a variant, they found one. Charlie has a unique variant on his V-something gene - but it's not a helpful gene, as in while they know that variations on that gene cause DCM, they can't predict any outcomes from it. So, useless. Matt and I gave our blood samples today, which means in 6 weeks we'll find out if we can have more kids, or if the chances are too high to risk it. It's 50/50 that either we passed it on to Charlie, or Charlie mutated that sucker all on his own. This is hitting me hard - there is a very good chance I won't be pregnant again. Sincerely, in that case, I took Charlie's pregnancy for granted.

ALSO Friday: Matt pukes on the way home from the hospital. Not. Kidding. He's been sleeping since 6pm. It's now 10, and I have made him a little 'apartment' in our room until he gets better. Honestly, though, if he has the flu, we all have it.

This is not, by the way, a cry for help. I am fine. We are fine. Really. This is where I vent. So don't go Facebooking me about how I'm doing or being me a casserole. Really, I'm FINE. :)

Have you had a worse week? I hope not. Tomorrow will be a better day? How could it be worse?!

**Update** Hilariously (or not), I fell and broke my arm the day after I wrote this. That's how it can be worse.

One week - Barenaked Ladies

It's been one week since you looked at me
Cocked your head to the side and said I'm angry
Five days since you laughed at me saying
Get that together come back and see me
Three days since the living room
I realized it's all my fault but couldn't tell you
Yesterday, you'd forgiven me
But it'll still be two days till I say I'm sorry

Hold it now and watch the hood wink
As I make you stop think
You'll think you're looking at aqua man
I summon fish to the dish although I like the Chalet Swiss
I like the Sushi 'cause it's never touched a frying pan
Hot like Wasabe when I bust rhymes
Big like Leann Rimes
Because I'm all about value
Bert Kaempfert's got the mad hits
You try to match wits, you try to hold me but I bust through
Gonna make a break and take a fake
I'd like a stinkin' achin' shake
I like vanilla, it's the finest of the flavors
Gotta see the show 'cause then you'll know
The vertigo is gonna grow
'Cause it's so dangerous
You'll have to sign a waiver

How can I help it if I think you're funny when you're mad?
Trying hard not to smile though I feel bad
I'm the kind of guy who laughs at a funeral
Can't understand what I mean? Well, you soon will
I have a tendency to wear my mind on my sleeve
I have a history of taking off my shirt

It's been one week since you looked at me
Threw your arms in the air and said you're crazy
Five days since you tackled me
I've still got the rug burns on both my knees
It's been three days since the afternoon
You realized it's not my fault not a moment too soon
Yesterday, you'd forgiven me
And now I sit back and wait till you say you're sorry

Chickity China of the Chinese chicken
You have a drumstick and your brain stops tickin'
Watchin' X files with no lights on
We're dans la maison
I hope the smoking man's in this one
Like Harrison Ford I'm getting frantic
Like Sting I'm Tantric
Like snickers guaranteed to satisfy
Like Kurasawa I make mad films
Okay, I don't make films
But if I did they'd have a Samurai
Gonna get a set of better clubs
Gonna find the kind with tiny nubs
Just so my irons aren't always flying off the back swing
Gotta get in tune with sailor moon
'Cause the cartoon has got the boom Anime Babes
That make me think the wrong thing

How can I help it if I think you're funny when you're mad?
Tryin' hard not to smile though I feel bad
I'm the kind of guy who laughs at a funeral
Can't understand what I mean?
Well, you soon will
I have a tendency to wear my mind on my sleeve
I have a history of losing my shirt

It's been one week since you looked at me
Dropped your arms to your sides and said I'm sorry
Five days since I laughed at you and said
You just did just what I thought you were gonna do
Three days since the living room
We realized we're both to blame
But what could we do?
Yesterday, you just smiled at me
'Cause it'll still be two days till we say we're sorry

It'll still be two days till we say we're sorry
It'll still be two days till we say we're sorry
Birch mount stadium, home of the Robbie

Yesterday

Yesterday was a tough day, made tougher by the fact that I just wrote all this out and then when I went to get the lyrics to today's song, the entire post deleted itself. You just can't win sometimes, you know?

Anyways, I posted on Facebook that yesterday was hopeful. It wasn't - at least, I didn't really think it was. That post was more for the masses who I don't want worrying about me and I don't need writing on my wall "Is there anything I can do?". Because there isn't anything anyone can do, and that's what makes this entire situation so goddamn frustrating and sad.

So, Charlie had his echo yesterday morning and was a trooper throughout. They got all the pictures they needed. After, he needed to eat, which for anyone who knows the situation is not an easy or short process. After eating we met with the cardiologist (we have now been at Sick Kids for 3 hours or so, running on 5 hours of sleep) who told us that Charlie's heart is still 'really bad' (direct quote!) and that they haven't seen any improvement yet. I put 'yet' because they told us not to expect any improvement yesterday - it takes longer then that usually for the drugs to work. But, hope springs eternal, somehow, and we were hoping for miraculous results. The meeting with the cardiologist was a downer.

After, we met with the genetic counsellor, who explained the genetic testing process to us and got us to sign off on sending away Charlie's sample. Charlie's sample goes to Harvard (!) where 46 of his genes will be tested. The counsellor said that she does get quite a few positive results back, so that's sort of a good thing (I always think knowing is better then not knowing). If it comes back positive, then Matt and I have to get tested to see if we are carriers, which impacts future children. If it's negative, then it's called 'idiopathic' DCM, and that leaves everything up in the air. Either way, the results aren't something to celebrate - just more information to arm ourselves with. We'll her back in 3 months or so.

Lastly, we met with our dietician. We could have use a 'rah rah' sort of meeting, but instead it just seemed very blah - yes, he's gaining weight, he's kind of catching up, oh good he's taking some cereal - again, it seemed there was nothing to celebrate yesterday. And we need celebrations on a daily basis.

We also went to see friends of ours yesterday who just had a baby. It was tough, but in the vein of keeping this short (yeah right!) I'll save that for another day. The new baby is a little peanut and we just loved her.

Today's song is 'Yesterday' by the Beatles, for obvious reasons.

**Update: Today's celebration is that Charlie just ate 1.5tsp of rice cereal, seemed to want it (kind of) and has kept it down (so far). Small victories!**

Yesterday - The Beatles

Yesterday,
All my troubles seemed so far away,
Now it looks as though they're here to stay,
Oh, I believe in yesterday.

Suddenly,
I'm not half the man I used to be,
There's a shadow hanging over me,
Oh, yesterday came suddenly.

Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.

Yesterday,
Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.

Why she
Had to go I don't know, she wouldn't say.
I said,
Something wrong, now I long for yesterday.

Yesterday,
Love was such an easy game to play,
Now I need a place to hide away,
Oh, I believe in yesterday.