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

 

Beautiful Boy (Darling Boy)

So, we've spend the last few days in this hospital getting Charlie's final med started and monitored. The good news is that he has taken to it well (as we expected) and we get to go home tomorrow! His blood pressure (which is what they were monitoring), has stayed fairly level even with the full dose, and so we are finally on his entire protocol of medications. He now takes 6 different types every day, two of which are vitamins or non-DCM related, and four that are helping his heart. He's been in a great mood while we've been here - picking up his mad flirting skills right where he left off. He now has three (!) different nurses who all think THEY are his girlfriend. Man, there's gonna be some hearts broken in Ward 4D...

So, our next challenge is continuing to gain weight and getting him down to 4 feeds a day - what a dream! Then, we'll have more time to fit in cereal and other foods, which we are going to start in the next few weeks. I finally get to break out the Babea (Google it - the most amazing baby appliance you'll ever see) and make some real baby food!

Being in the hospital reminds me of a letter a close friend sent me upon becoming aware of Charlie's situation:

"There will always be a fluttering somewhere in the back of your mind. That is panic. You will always know where it is. Sometimes it will be delicate and faraway, and you will be able to to ignore it and check emails, make phone calls and eat food that you may even taste. Sometimes it will be present, but quiet, and you will fidget and fuss over blankets and the set-up of chairs and worry about useless things like showers and sleep. And sometimes the fluttering worry will be like a storm on the other side of a thin sheet of glass, and all you will be able to do is remember to breathe. The glass will not shatter. It may seem like it will, but you will be able to withstand more than you ever imagined you could, more than you ever imagined was possible to know, more than you will ever be able to explain to anyone. The fluttering is most dangerous when it is quiet. It will sneak up on you unawares, and swell and fill your consciousness and suddenly you will be in that storm, unable to breathe for the sheer panic of the moment. " Being in the hospital, surrounded by adept medical staff, keeps the panic "delicate and far away". The perspective here is skewed, too - I just finished having a conversation with a mom who is celebrating her son's longest morphine-induced nap ever. Charlie goes home tomorrow to continue his essentially normal baby-life. I can't imagine that mothers panic. Mine is manageable, especially here.

In honour of Charlie and his amazing spirit while we are here in the boring, boring hospital, Lennon's 'Beautiful Boy (Darling Boy)' is our song of choice for today. We are exhausted and bored and panicked, and yet somehow Charlie's smile makes everything better. He is an amazing, beautiful boy.

Beautiful Boy (Darling Boy)

Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Darling,
Darling,
Darling...