Friday, June 23, 2006

One of those days big time and no GOSH for now!

As I write, there are 4 very excited and happy girls upstairs telling each other ghost stories and discussing the boys in their class (and this is the 10th birthday - what is to come???)


It has been one of those days! We had clinc at 11 so I decided to go straight from school pick up, rather than pop home for about half an hour, and get a coffee when we got there. The trams decided to come to a complete standstill at Mitcham so we had to get a slow train to Victoria and then a very slow bus. I could have done that much quicker from East Croydon! So, we were late for, what was a very manic clinic. Still, we should have been seen by about 12.30 as they were running an hour late. We finally went in at 1.20 as several nurses who don't usually work there kept putting later appointment's notes on top of Williams and some parents were even switching them. We had a good old chat with the consultant though who is also beginning to feel that William's gut problems are syndrome related and agreed that he is very characteristic of Costello Syndrome. I am not going to go into any more about this syndrome yet. This time last year we were told it likely William had CF and told to read up and get involved etc. I have read a bit about Costello and agree it fits Wills very well but am not getting too involved until he has a clinical diagnosis at least. They are going to talk to the geneticists about it and I will post more if they agree. We also discussed the pros and cons of the illeostomy. It was nice because he shared that it had been a really mad clinic and was pleased to be able to relax with our appointment. It is nice when you get that rapport with your consultant. He stressed the need to get our local paediatrician more involved in overseeing William's increasingly complex and varied issues. Everyone agreed that his feet and walking are becoming an increasing problem and it could be that this, and the gastro problems, are neurological due to the syndrome (whatever it may turn out to be).

Anyway, I flushed Wills off the TPN and was set to rush and get the girls from school as time was now well and truely racing by. I got to the bus stop only to find I had left my handbag with absolutely everything in it! Needless to say, it wasn't there and no-one at the clinic had seen it. I couldn't believe it, I had had it 5 minutes before! Eventually, much to my relief, it turned up at security. By then, I was really getting late for the girls. The tram driver at Wimbledon watched me run passed him and pulled away as I reached the door (something Tramlink drivers are only too good at doing!). I was 30 minutes late for the girls.

Later, Hope went up to the shops for bread. While she was gone, I chased GOSH to be told that the child who was going home is not anymore and William will not be going in next week and may do the week after but then may not for weeks. It was such a comedown as I had been so high on adrenaline getting ready to go. I do feel for the family that thought they were going home though and understand how difficult it is to predict these things but it is hard to have a plan for the girls that is then not needed and just be expected to come up with another one in a few days or few weeks time! It is a rollercoaster, it really is. Anyway, as all this was going on, Hope came home and I even opened the door for her. 20 minutes later, I was getting worried that she hadn't got back so went looking for her, along with a neighbour I met on the way. I couldn't see her and came home thinking she would be there but didn's see her outside. So, getting seriously worried, I came in to think what to do next with the neighbour still with me -only to find she had been home all along and I had let her in! It had been a long day.

All the girls sleeping over called to make sure it was still on in case of a William crisis. One Mum, a good friend of mine, brought round a bottle of wine as I sounded so stressed - bless her. It has now been consumed and I am much calmer. The sleepover has been a huge success. Ellie did not get the predicted strop about being left out and is still having her party tomorrow as life is very much in the air and unpredictable at the moment (GOSH could still ring Monday and say later this week!). Mind you, it always has the potential to be like this. We really do live one day at a time these days.

2 comments:

Shadow said...

Thinking of you all at what must be a majorly stressful time. Enjoy the extra days at home. Hope Ellie has a lovely party. Fingers crossed for the call from GOSH soon and that they get to the bottom of things and find out exactly what William has and how to treat it.
Hugs to all.
xxxx

Tinypoppet said...

how wonderfully happy do those girlies look :) So sorry GOSH have cancelled Wills bed, it must be very frustrating and not good for stress levels! As you say, take it one day at a time, enjoy having those extra few weeks freedom with William at home, and when he does go in, they will hopefully give you a more secure idea of what's going on and what to do. Lots of love to you all as always xxx