The past 2 weeks have been really tough for poor William - and us! Where to start?
Well firstly William got quite a bad cough about 10 days ago and as he was coughing so much he was then vomiting - we ended up taking him to the hospital incase it was a chest infection. His chest was clear but the doctors were worried incase it turned into something so they put him on antibiotics.
They also noticed an infection in his gastrostomy site so he was put on another antibiotic for that at the same time.
As usual the antibiotics gave him horrendous diarrhoea (can't spell that sorry!) which resulted in his poor little bottom becoming bright red and sore to the point that it was weeping and he was screaming in pain. Sudocreme etc just didn't touch it. Add this to the fact that he was still coughing and vomiting and back we went to hospital on the Wednesday.
They changed his antibiotics as the original one clearly wasn't helping but again his chest was clear! That afternoon we had an appointment with the orthopaedic surgeon but I'll fill you in on that later on.
So back home, William now on different medication and still coughing, still vomiting and still very sore bum. Following day he was much the same but we were due to go to a wedding in Crawley, myself and Kev got ourselves dressed up ready while William was having his nap only to find his fingers bright blue when he woke up which was worrying, and then yet again he vomited and poo'd everywhere. Clearly something really not right so I phoned the hospital and was told to bring him straight down!
So out of the wedding outfits and into the car we go. End up on Beach ward for the 3rd time in a week and this time see 2 more doctors who again say his chest is clear and advise us to take him off the antibiotics before sending us on our way!
Poor William was due to be the star attraction and turn on the Christmas lights in east preston that day but he was too unwell to go :(
It's now 5 days later and his bottom is much better and not as red and sore as it was but he is still vomiting and now it's not just when he coughs - it seems to be during or after almost every meal which is not good as he is clearly losing weight now. So if things don't change I guess we will be back down to the hospital again in the next few days!
So back to our visit to the orthopaedic surgeon... We were referred there are Williams last hip x-ray showed his right hip was starting to move out of place. This is quite common in children with CP who aren't weight bearing etc. We went to the appointment expecting him to have a quick look and say they would keep an eye on it so we were both rather stunned when he said it was already out and he would need to refer William to The Evelina Children's hospital in London as he is likely to need major surgery to correct it.
William should have been weight bearing since the age of one and as yu may have gathered from previous blog posts, he hasn't been able to ad his standing frame was unsuitable for him and despite constant requests still hasn't been changed or adapted for him. He has probably only been able to stand 5-6 times in 2 years. It makes me really resent the Physio service at Worthing hospital as it was such a rush to get him a frame and it was very important at that time but as soon as we had one, no one could give two hoots as to whether we could use it. Seems like they were just covering themselves - well in this case it's backfired hugely hasn't it.
So now we just wait for the appointment for the Evelina but in the meantime he can't weight bare at all so no kneeling, standing etc just sitting in his chair. Although I think that's all the physios actually want all the children to be able to do round here.
Anyway, that's all rather grim so how about something to cheer us all up after that???
William did manage to roll over last week, he did it on his own with me just telling him what to do. I didn't touch him at all just encouraged him and told him to move his arm / bend his knee etc etc. When he managed it he seemed rather shocked and didn't really know what to do nice he was there!! He hasn't managed it again on his own yet but that might be because he's been poorly.
I'm sure more has happened in the past few weeks but I seem to have just been faced with vomit, poo and a huge pile of washing so I can't remember much else!
Another update soon!
