overnight thoughts

Well since I couldn't sleep, I've been googling and emailing overnight and followed up my plans with phonecalls this morning.

Oxford
The booking officer at the John Radcliffe was v patient on the phone this morning. I asked whether she could put a second appointment in just in case the first one on 21 March has to be cancelled through an emergency taking precedence. She doesn't have a rota past March for the consultants, so can't do that yet, but is happy for me to phone her again and put a second one in the diary. She seemed a little wary at first (I don't think it's the usual procedure and I guess would cause problems if everyone did it) but could see the logic. If J is cast on 21 March, then the second date is freed up and that helps others.

She received the faxed form yesterday and it did have "urgent" and "asap" written on it. Shame it wasn't sent start of December. Shame it had the wrong name on it! I have to stop kicking myself for not taking action before now. No good comes of kicking myself! The truth is that Mr N sent a letter to Mr M (copied to me) at the start of December saying that J was on the waiting list for serial casting at Oxford, but he was waiting to hear from me to actually transfer hospitals as I was mulling things over. The wording said he was on the waiting list. So I thought I had time to be sure about things before confirming the transfer. With hindsight I could have confirmed start of December and followed up then so that I knew he actually was on the list. Things would have happened much quicker - and then if I'd been unhappy I could have withdrawn him at any time. But hindsight is wonderful and useless.

We will hear back from Nuffield (Oxford) for the pre-op appointment when they see the entry in the computer system.

United States
Others who have children being treated with Mehta casting in the US said via emails overnight that Shriners (various) and Scottish Rite (Texas) are possible hospitals. There are Europeans being treated there (despite what their websites say about not accepting people from outside the US/Mexico/a few local countries).

My current plan is that I will continue to pursue the US idea until we have evidence with more x-rays about what is actually happening. If J's curves are static still, then the wait till 21 March would be more bearable. If they are getting worse then I would be pulling out all the stops to get treatment ASAP no matter what.

X-rays
I've rung the plaster room at Birmingham to see what's happening (they said yesterday they'd speak to Mr M's secretary). They have been trying to get hold of her, but she's in meetings this morning. She will ring me directly. They were asking to get me a "forced appointment" (ie you don't have an actual appointment, they just fit you in on the day you're there). I wonder how soon that can be.


The whole thing has made me v v v keen to get an x ray asap so that at least we know what's happening inside J's back.