Hi,,
I dont get chance to come on here much as caring for ds takes up most of my time. I know some of you will remember me posting about him (if you dont, this is his website www.harrysjourney.co.uk - if you go on it leave a message as we are trying to see how many people we can get to sign his guestbook)
Things have deteriorated for harry over the past few months. His seizures have increased again. He has had long periods in hospital due to unmanangable pain and we have tried lots of medicine. Until last week he was on four hourly dihydracodiene, clonadine patch and gabbapentin just for pain. We had to get an emergency appoingment on friday cos he had gone down hill. He was stiff and rigid continually, so bad that he was arching his back out of his special needs chair and crying all the time (this is a child that can not move at other times). Any way we met with the lovely palliative care dr and our wonderful neurologist who fitted us in last minite. They have come to the conclusion that the time is right to start harry on morphine. They feel that we need to concentrate on making him comfortable and no longer try meds to cure him.
Also they want to admit him for four weeks to wean him off all his meds (he currently had 11 four times a day) as he has continuous chronic diahoreah and they think this may be contributing to that. He has maximum imoduium and usually codiene would really constipate someone. During the detox from the meds he will be sedated with morphine and midazalam, and we have been told it is likely he may crash.
We have told the drs that we cant go into hosp until november as we are making a trip to atlanta georgia. There is another family witha child the same as harry but six months older and we have visited them for two years. They have been told that the drs can do no more for him and its only a matter of time. So i am taking harry to see him for prob one last time. If you go the website this child is called cooper.
We know we are getting to the end and are treasuring every second we have with him. I just wanted to update everyone.