Friday, September 22, 2006

Another hectic week!

Well, it has been another crazy, hectic week - hence the first post since Sunday! On Monday, we went back to Chelsea and Westminster to have William's jejunal tube reinserted. This turned out to be particularly tricky as his stomach was well and truely refusing to let anything through (the huge amount of gastric aspirate pouring out of his gastrostomy was testimy to that!). The tube just would not go through the stomach into the jejenum. At one point it ended up folding back on itself right up into his oesophogus - the poor thing was so distressed and poor Grant, out gastro specialist nurse, was really upset at how difficult it was being for William. Eventually, we got it in place. We then rushed home to get Hope to her first secondary school open evening - for once William's TPN and drugs had to be done late when I got back! This was a lovely school and Hope's favourite - the whole issue of school applications and selections will, doubtlesly, form a topic for a blog entry later in the week!

On Tuesday William's CHASE nurse came round for a few hours so I got my first day off TPN since July - hooray!! This was great timing as Hope and I were off to another secondary school.

On Wednesday morning I went to an introductory session for Makaton sign language. This system of learning signs with language is really helping William's development. He only knows a few signs so far but these are helping him to learn to express things such as "please" to ask for something and "more". I am trying to learn enough to sign and speak to him as much as possible to help his language development.



William's physio came round on Thursday to bring William's new Piedro boots. They are absolutely great and look like trendy Timberlands. They help his walking a little bit but he needs a lumber support to help stabilise his pelvis. The physio and OT are coming on a joint visit to fit this in a couple of weeks. We also had our Portage session and began the lengthy task of assessing what he can and can't do in order to tailor his programme. Today, the OT came with his new chair. This is also great as it supports him really well. We are hoping to be able to do some work to get his hands working together more now he is better supported. We may have to try hand splints to stop his fingers bending back too much. He does need a wheelchair with similar trunk as he still has a tendency to fold in half in his buggy. We will sort all this out in the next few weeks but we really are getting there with his equipment and therapeutic needs.

We were all set to go into GOSH on Monday with transport booked, TPN arranged to be delivered there, Paul's Mum ready to look after the mechano leg and children...until 6.00 this evening when the registrar called to cancel his admission again! Apparently, the only doctor who can do the test he needs is not there next week. We don't really understand why he was booked in then, or why it took unitl 6.00 the Friday before to realise the problem as we had the letter a month ago and phoned several times to clarify information. Apparently, the doctor we need has full lists until the new year so Wiliam won't be going in this year! The annoying thing is that we have a lovely new integratged gastrostomy and jejenostomy we were hoping would be fitted while he was having another procedure. This would have been so much more comfortable for him and he wouldn't need to go through the jej tube being reinserted so regularly. It is also very necessary for him to have one, neat tube to fit with his pelvic support. I am hoping Chelsea and Westminster will be able to fit him in to have the tube changed soon. Oh well, at least next week is a calm week though as I have cancelled everything thinking we would be in GOSH!

1 comment:

MoO said...

Hello Sarah, sorry the appointment at GOSH got cancelled but atleast you can have a nice relaxing (well sort of ) week.

I have been looking into joining a running club, there is one very local to where I live, so I will keep you posted. How are you getting on with your runing club? you amaze me how you manage to make time for yourself with the busy life you lead. Sending you an all the family lots of love

MoOxx