June 24, 2009

Not much news really - the letter asking us to make Charlie's next outpatient appointment at Cardiff FINALLY arrived today. (only about eight weeks later than expected!) I'm hoping to arrange it for after he breaks up for the summer, so he doesn't have to take any time off school.
I have to say though, if ever there were a couple of months when we needed his appointment to be a bit late, May and June have been those months! What with everything going on with Mum and Dad's move, plus all Dad's hospital stuff, our holiday and my run - we've had a lot on our plate already, so it's all worked out well in the end.
I'm also really glad the letter's come (for the first time ever!) because it means I don't have to ring the hospital and initiate the appointment myself. I know it sounds stupid, but when they write to me and tell me to bring Charlie in, I just do what I'm told - follow the doctors' orders and take him to the hospital as requested.
However, if I ring and chase to see why he hasn't been called yet and force the appointment to happen, it feels like I'm starting the ball rolling... and I really don't want to be doing that, knowing that the Fontan is SO imminent.
Obviously, if Charlie was showing signs of deteriorating or struggling, we'd have been on the phone in a shot, but while he is so wonderfully well, it is very difficult to be the one starting the chain of events that will inevitably lead to his next surgery.
I know that sounds mad, and doesn't make any sense really, but I know what I mean!
I'd brace yourselves, if I were you - I imagine there will be quite a few random, slightly nonsensical posts coming from me as we wait for Charlie's Fontan!
Talking of Fontans - Charlie's friend Archie (mentioned in my last post) was doing somewhat better earlier today - he was taken off the ECMO machine and the surgeons closed his chest, although his blood pressure remained very low and he was still on the ventilator. However, the last I heard, he was really struggling to maintain his BP and there was talk of having to put him back on ECMO. This is a horrendously difficult time for Archie's mum and dad - they are on a rollercoaster ride which is hard to imagine. As I said yesterday, they would be grateful for any thoughts/prayers/positive vibes you can spare.
Dad saw the oncologist yesterday, who is keen to continue with the plan for chemo very soon. Dad is now waiting for a letter to tell him when the chemo will start, and we hope that it will be effective. Dad is feeling much better in himself - his pain is much reduced, and his sickness is better too. He even came out for a car ride with me this afternoon, when we went to pick Mum up from the shops. We're looking into getting a little wheelchair for him, so he can get out and about on his good days. (Much as he and Mum love their new home, I think they're getting a bit of cabin fever, being stuck in there 24/7!)
That's about it for now - rehearsals are in full force for Charlie's end of term presentation - so here's a quick sneak preview of him in his clown costume! (No, before you ask - I didn't make it. I am a complete failure when it comes to making anything other than birthday cakes!)