This is my 2nd go at writhing a blog. I did try before Christmas, but I clicked on a wrong button and lost the WHOLE BLOG. I was not very happy. Anyway I am going to try again. I finished my last one when Stephen was in Hospital.
When we arrived at our local hospital, we got Stephen to get changed and said that the Doc wanted to see him. I had not told him that he was going to have an operation as I thought it might cause him too much stress and it was quit possible that he would refuse to have anything done. These days if the patient says no, then that’s that. As it was, the surgeon had to sign the papers because Stephen didn’t have the “mental capacity” to understand what would happen if he refused the operation. I not allowed make this decision for him, it is none of my business. As his mother this makes me VERY ANGRY. And I have already told quite a few people what I think. Some how I do not think this makes me very popular. But I’m not here to win any contest, just to save my son pain.
Now I am deviating. Stephen’s nurse was very good with him; she didn’t try and get it bloods, temperature or anything like that. She said it would course him distress, at last some one who understands. I asked her if she could see the Sister and the Anaesthetist for me and remind them about the sedation that I had phoned about 2 days ago. She said she would try but couldn’t promise anything. Stephen was 1st on the list, so I didn’t it would be long. We saw the Anaesthetist come onto the ward, and, off she went and saw the 3 men who were before him. I was staring to get annoyed again. When she did get to him, it was only 15 mins. before he was due to go down to the opp. theatre. I told her that I had phoned the ward days before so they would know all about Stephens “problems” and asked for his sedation. She was sorry but there was not enough time for it to work so he would not be able to have any. I really got mad then. I said a lot of things, along the line” I phoned, tried to save time, if she hadn’t spent time with the men and she seemed to have a problem with the Downs side of it.” She told me that if he was sedated there would have to be an anaesthetist with him all the time. She spent a lot of time arguing with, I then pointed out that she was still wasting time. During this time the 30 mins. that it took to work had long passed. I suggested she DID give him something! and quickly and! if necessary to put him down the list to no2. At last she said yes. And would give him 10mg of some tranquiliser, when I stopped laughing , I told her he had had 40mg one time and he was still up and walking about. Next offer was 20mg. Which, in the end we accepted.
When it was time for him to go, I was allowed to go with him. When we got to the anaesthesias’’ room, there was my best friend. She started faffing about with the gas, tiring to get him to breath it in. “Where do they get them from.” It was just as well there was another Doc. of some kind there. He took the mask from her and put it over Stephens face. Yes he did fight but at lest this time I didn’t have to help hold him down and help gas him, or that was what it seemed like at the time. He new this time he was in the hands of some one who knew what he was doing.
As this is getting rather long, I will stop for today and come back another time
FormerMember
Hi Stephens mum, So sorry to hear of Stephens illness . Just read your blog and my glasses got all steamed up with anger with the complete lack of regard for Stephen and you his mum. Sometimes it seems that treatment is done on a conveyor belt system and the needs of the actual individual comes second. Who else knows Stephen more than yourself, so really it should be them taking advice from you as to how to make things more acceptable to Stephen. It does make my blood boil somewhat. My friend has a daughter who has cerebal palsy, and like yourself has spent years banging her head against a brick wall with doctors, social services etc.
Anyway you dont want to hear me banging on, but i just want to wish you well and send Stephen Well Wishes.
Hugs to you both..............and keep fighting xxx
I'm so sorry you had such a bad time with the hospital. Particularly with the Anaesthetist. She was obviously one of those people who does that job so that she doesn't have to learn about Downs or Cerebral Palsy or anything "difficult".
I used to work for a disablement and care charity which had Deafblind adults to care for. Mostly they were quite young - in their twenties. I was there when the legislation came in preventing parents from signing for operations, because the adults were regarded as being responsible for their own care. If Stephen had been able to act for himself you would have had no qualms about this. You are not being disregarded, it is just that he is deemed an adult, and technically he is, so the Surgeon has to make the decision and sign the form himself on clinical grounds. You would have lost all these rights anyway when your son reached 18, so the law recognises this.
It is hard for parents all down the line. If it is any comfort, Downs children are being given much more attention and help all along the line nowadays, and the Downs son of a friend of mine was able to choose his own career and begin to train for it when I last heard.
When I went in for my op, I couldn't go into the ward originally designated the night before, and found myself in a large Nightingale Ward. They didn't seem to know anything about me, but I had fortunately seen my surgeon in the main doorway and I was able to reassure him that I had turned up, because he had been looking for me "everywhere". He was able to tell me that I was the first op of the day, and I was much relieved. It was Ramadan and he was a Muslim, so his energy levels so early in the day would be fairly high! There was only one thin pillow and no blankets on my bed. Eventually they found me another pillow and an extra sheet, so I wasn't cold, and I wasn't warm. I kept reminding myself that the care would be better after the op and at least that was going ahead.
You should have had more reassurance, as Stephen would have picked that up from you. I hope that his operation went well and that he is more comfortable now.
