Tuesday, April 20, 2010

Four weeks ago...

Four weeks ago tonight, Charlie was fast asleep, and I was tossing and turning on a camp bed at the hospital.
Sleep could not be found, and I spent hours processing every possible scenario that could result from the following day's surgery. And I mean every possible scenario.
I would have given everything I owned to jump four weeks down the line to where I am now.

Charlie is tucked up safe in bed upstairs.
He is fast asleep, cuddling his precious Max dog and Alfie monkey. (And Dylan the enormous fluffy dog, who was FAR too big to take to hospital.)
He is getting better and better every hour and every day that passes.

He was great before his surgery - I must admit we'd wondered whether we would see any real difference afterwards.
His sats were pretty high for a child pre-Fontan.
He wasn't especially blue, unless it was particularly cold or he'd been running around like a mad thing.
He was managing to join in with everything his friends were doing - albeit in a slightly modified manner.
Yes, eating was always something of an issue, but we were used to it after six-and-a-half years of battling to get him to eat enough to gain weight.

But now. We are almost four weeks post-Fontan. I remember writing a pretty gloomy post here when we were two weeks post op, and I don't think I could have envisaged where we would be less than a fortnight later.
Charlie is so pink. Yes - he was fairly pink a lot of the time pre-Fontan, but now he is pink ALL the time - even when he's running about like a loon.
He is not getting breathless any more - we haven't used his buggy at all so far. He scampers up the stairs without having to sit at the top to get his breath back.
He had a McDonalds for lunch today, and I watched amazed as he ate. He ate at a 'normal' pace, and didn't put his chicken nuggets down between mouthfuls.
I know that doesn't sound much, but previously, he would take a tiny bite, put the food down, and spend a good five minutes chewing, or holding the food in the side of his mouth, to the sound of either Pete or me shouting 'Chew!' Then we would have to remind him constantly to pick up his food and carry on eating.
But today, he dipped his nugget in the sauce, bit off a quarter of it, chewed it three or four times (while dunking the next bit in the sauce), swallowed and bit off the next piece. A whole chicken nugget gone in less than two minutes.
Like I said, I know it doesn't sound much, but for us, this is ENORMOUS.
He has eaten a boiled egg, toast, yoghurt and fruit every morning for breakfast since we've been home, and the egg and toast have gone in the time it has taken me to tidy the kitchen and wash the dishes.
Long may it continue!
His scars are healing well - he pulled all the steri-strips off his pacemaker scar today, and was happy to let me feel to see where the edges of the box are.
He likes to take inventory of his scars whenever he has his shirt off, and we really enjoy seeing them heal so nicely. He is not bothered in the slightest by the marks left behind by his surgeries - if anything, he is proud of them. He has already shown off his pacemaker scar to his friend, Fiona.
He is going to bed as happily as always, sleeping well and waking up cheerful and ready to start the day.
He spent a fun hour in the garden this afternoon, yelling to Fiona over the fence, swinging on the swing, and scootering around on his Spiderman scooter.
He is our happy, cheeky, polite, bright, sunny boy of old, and thus far, appears to have come through the past four weeks remarkably unscathed.
But then, we would expect nothing less of Charlie.
Like it says at the top of this blog - his heart is special, but not half as special as he is.
We are so, so proud of our Charlie-Barley, and we love him so very much.

PS I was asked in the comments if there's a way to contact me directly... if you click on the 'View My Complete Profile' option in the top right sidebar, when the next screen appears, there is an option to email me under the 'Contact' panel on the left hand side of the page. Hope that helps - and I look forward to hearing from you!


The Cryer Family said...

Totally happy for you! Wonderful!
Will give you a call Ali when (IF) we ever get back to UK!!
Helen x

Heather said...

this post literally brought tears to my eyes! :) i completely understand what you mean. asher was his most stable EVER going into the fontan, and it was a rough, rough ride afterward, but now that we're home, he's better than ever!! "fortunately" (for me, anyway, LOL) he doesn't have more energy (due to the pesky AV block, which is still keeping his HR at 80 with the pacer), but he doesn't get tired as easily, eats like a normal kid, and doesn't turn blue anymore!!! he's actually PINK!!!

i'm so happy charlie is doing so well. you must be absolutely thrilled! enjoy! <3