Saturday, June 17, 2006

Great Ormond Steet - At last!

Well, we finally heard from GOSH this morning to say that William will be admitted within the next few weeks. Apparently, they plan to have him in "long term" to assess his clinical picture etc before planning their tests. I have heard that GOSH tend to disregard everyone elses tests and start from scratch! Well, there are still a lot of unanswered questions so a new pair of eyes over everything may not be too bad a thing. There is more scope for multi-disciplinary discussion about his lungs, minor heart defect, co-ordination and walking and "syndrome facial features" etc in addition to his main, intestinal problems. I hope that long term does not mean too long. It doesn't look like we will get much warning when the bed comes available so we are now going to have to make sure we are always only a couple of days away from being able to pack up life and send the girls to Grandparents and Wills and me into the hospital. This will mean staying on top of washing etc and making sure I have all the stuff I need to carrry on with work etc. I will also be assembling some treats like a few good books, DVDs etc as the televisions on the patient line will, no doubt, go off at 9! C and W have manged to negotiate all night TV for long term parents which is so great! Paul will be really busy with Glyndeborne so there won't be home until midnight most of the time so it is going to be a bit lonely. In the meantime, ellie's birthday party has now been bought forward to next weekend to make sure we get it in. Hope has hers on Friday anyway so it will be a weekend of it! Poor Ellie, This will be the 3rd time she has had William and hospital overtaking her birthday - he was born the day after her birthday so I was in hospital then, last year he was in the Brompton for it, as well as his first birthday, and this year looks almost set to be another year where he will be in hospital for both Ellie's and his own birthday. Poor Wills has not yet had a birthday or Christmas uninterrupted by hospital! Of course, this isn't too bad for him, in fact he probably enjoys the extra attention, but is tough on the girls - and me. Who knows, we may be out by then but Ellie's party was planned for before the end of term, otherwise, everyone goes away, so we definately need to get that in quickly. Of course, we were told "within weeks" back in March but this time it is in writing. We could still be waiting at Christmas though!!!

1 comment:

Shadow said...

Good luck with getting a bed soon. I hope the girls "birthdays" are fun and they enjoy themselves. Fingers crossed "long" won't be too long.
Thinking of you all. I wish I could be of some help.
Hugs to all.