stephens mother's blog

GETTING BETTER.

2009-01-06T13:21:27Z

The operation 7th November.2008 Things went well at first. On the Monday, he seemed to be in a lot of pain, in his chest and in his tummy. He was crying, whimpering, and groaning. I upped his pain killers but nothing seemed to help him. By the time it got to 10pm I phoned the NHS help line. There were phone calls back and forth, then the one to say they were sending out a Doctor. He came an hour or two later. He tried to examine Stephen and take his temperature. But it was all to no avail. If Stephen said NO them the Doctor would not go near him. Everything is so P.C. these days. He might be a man but this is a child in a mans body. There is not much I can say about this, I know it is the law, but PEOPLE who make the laws don’t have to live with the results and pick up the pieces. Any way I stayed up with him all night, tried to catch some sleep in the armchair. I was badly hurt in a car crash 15 years ago, so it’s not the best place for me. (Sorry a little bit of self pity crept in there) After 2 weeks at home he was board and wanted to go back to 240, this is the house where he lives with his friends. I phoned and talked with his key worker, and between us we sorted out the things that needed sorting. He went back on the 20th November. He was very ready to go back and as he walked in the door, Lucy his key worker, Helen his girl friend, Val and Lyn his two friends who also live there, all came rushing to see him. They were all hugging and kissing him, and saying how much they had missed him, how glad they were he was back. I thought they were going to overpower him altogether. I might be his Mother who looks after him when he was ill but, these were his friends and who he wanted to be with the rest of the time. We call it Stephens’s harem, not in the normal way, but how they look after him. Run round for him, making cup’s of tea, doing his ironing and any thing that needs doing. So I knew he would come to no harm with them at 240.

Home at last.

2009-01-02T14:10:18Z

Once Stephen went to sleep I went back to my husband who was waiting for me on the ward. Because Stephen couldn’t have any food or drink, neither did I, and I was feeling very hungry. We went to the canteen had something to eat and more important, cups of tea. After about one hour I was phoned and told that he was out of the theatre, and I could go down and wait for him to come round. Back to the ward went my husband and off to the theatre went I. I had to wait a while, the doc. came and said it would be better if I didn’t go in yet, as he still had all the tubes still in and it might upset me. AS IF! I asked the doctor if he knew sign language? No. Well may be I should come in after all. He took along time coming around. But then we were able to go back up stairs. This had started at 1.15pm and finished at 5.15pm. After a few hours my husband went home. The nurses came in and out checking on Stephen, they got me a mattress for the night and thing started to get settled. First he found that he had a needle in his hand, and he tried to take it out. I called the nurse; she said it was far to soon for it to come out. That was fine by me, but not for Stephen. I explained to her that if she didn’t take it out HE would. And out she took it. Next he found the dressing; yes you’ve guessed it, that had to come off!!! And it did! I don’t know how he does it, but he does. He was sick a few times and even that doesn’t come with out problems. I’m sorry to have to say, but he swallows it straight down. It makes me feel ill just thinking about it. At lest by about 11pm he was going back to sleep again, so I made up my mattress and I went to sleep too. Come the morning he was ready to be up and about, well go to the loo. He didn’t want any food or drink. His nice named nurse kept on trying, then he started being sick again and straight back down also. His nurse told him if he wanted to go home he had better start drinking, which he did. He was still being sick, but they gave him some medicine to help stop it. By 2pm his was ready to go home. I had told him when he first came in he could have a burger if he was good, it’s always a good carrot for him. So off we went, home via MacDonald’s and a burger “take out” He eat it when we got home and a few chips. Settled down to sleep.

A run in with Anaesthetist.

2008-12-30T14:04:16Z

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

Stephens cancer.

2008-12-16T14:51:52Z

I have never had a blog before, so please forgive me and have a good laugh over my spelling mistakes. I am Stephens mother. He is a 41 year old (going on 4) downs syndrome. He dosn't talk very well, so he use sign language. I wish I was as good as him, but he seems to understand me. I had been saying for over a year that things were not right. I could never quite say what was wrong, nor could he. His G.P. got him test and it was decided he had a thing called Sarcoidoses. This was because he had problems walking, pain in joints, pains in chest, red eyes and red marks on his face. This led to him haveing x-rays and many visits to local hospital. As it was the start of summer Stephen said he wanted to go on holiday to Greece, so we sorted out the money and off we went. That was in June this year. My husband, Stephen and I had a great time. But Stephen wanted to go to bed eary every night, well it was his holiday, and we still had fun. When we came home we had the hospital again. This time in July. It might seem strange, but I were given good news, but I wasn't happy. What do I say to the doctor. It was good, but I still thought he was ill. I felt I was being a hypochondriac on his behalf. Well I left it and went home and told everyone the good news. In September my husband and I went away on our own. We had Stephen home the first weekend that we were home. I still have to bath Stephen, as his idea of a wash is 35 sec.from turning on the tap to pulling out the plug. As I was washing him I thought his testecals looked rather large, but he has always been a "big boy". When I took him back to the house where he lives, I asked them to take him to the G.P. I thought every thing must be ok as they hadn't phoned me. He came home for his fortnighty visit and again a bath. This time his testicals looked bigger and and plum coloured. When I took him back I asked what had the Dr. said. There had been a mix up due to holidays, and he hadn't beem taken. I told them to get an oppoiment there and then. It was, for the next morning. She took one look at him asked a few qustions and phoned the Hosptial for a scan. We got it a week later, on Monday. More scans talking to Dr. And we were told he had cancer, and he was booked in for the opp. that Friday. He had the chop Friday pm. I spent the night in hosptial with him and sent home Saturday. I will add some more anouther day, as I am out to a Christmas dinner tonight and I have to get ready. It takes a long time at my age.