Jay had OT and TCM and was very good for both of them. No real changes with Jay so nothing to report apart from he was back to his mischievous, cheeky self.
As previously mentioned I had an infected cyst, the antibiotics would clear it but the infection kept coming back so the Doctor said it would probably be best to remove it. The operation was was done in our room, it took about an hour, the cut was about 3cms long and I was given a local aneasthetic and the whole thing was a bit comical, there was 2 doctors and 2 translaters along with my mum, Julia, Jay and a nurse popping in an out to see everything ok. Julia watched the whole operation, she watches Holby City and Casualty and said the real thing was much better. After the stitching up the doctor showed us the cyst as I asked if I could take it home but the doctor said “no very dirty” then picked it up and cut it open with a scalpol and showed us white yucky stuff inside it and said just like spot in your face. This was the excitement for the day. Later on in the evening I felt some pain, Julia had her strong pain killers and came to my assistance. These made me quite light headed and when doctor Wisdom started to talk to me about Jay I was quite out of it.
December 11th, 2007
Jay woke up about 7.15am. He slept very well after his stem cell injection the previous day. He was in a good mood and it was as if he hadn’t had the injection. Nicola and Julia went off shopping and Jay and Grandma stayed in the hospital. We were told by Dr Amy to give physio a miss but to go to OT where Jay gave his all, saying all the letters Lilly asked of him. He tried so hard to carry out all the exercises with the bean bag. We then went back to the bedroom and Jay had his IV’s and at 4.00pm we went for TCM where Dr Wisdom talked about how Jay needed all his exercises and learnings to be repeated time after time to learn to programme the brain to make what comes easy to us become easier for Jay. After TCM Jay and Grandma went to the computer room for a short time just to keep Jay amused and then went back and had pizza, chips and peas for our tea. Jay was back to his mischievous self, doing everything he was not supposed to do when he did not have one to one attention. When Nicola and Julia returned they brought a wig back and we had lots of fun putting the wig on Jay and the rest of us. Then we had a visitor, Shirley who had worked at the cafe and left, called back to see us and she brought very tasty, fattening cakes which we thoroughly enjoyed. It was very good to see her as she had helped us greatly on many occassions when we needed a translator. Jay did not go to sleep untill about 11.00pm.
December 10th, 2007
Jay was taken for his stem cell injection at about 9.20am and came back at about 10.30am. We then had to keep him lying flat for 6 hours, he was given an injection for pain and an injection to relax him. This worked much better this time, thankfully, he slept most of the time, we also had to tie Jay to the bed with some restraints, this may seem drastic but it did help when he tried to get up. After the six hours Jay got up and didn’t seem in any pain he was a bit wobbly but that was it. We are very relieved lets hope it stays like this.
December 4th, 2007
Jay was much better today, he didn’t work hard for physio but I didn’t expect him to. He worked hard for OT and did everything he was asked to do. Jay is getting his stem cell treatment tomorrow morning which I didn’t think he would be getting. Fingers crossed it’s not as bad as the first one. I had a better day today, mum & Julia came back and I went out and did a bit of Christmas shopping.
December 3rd, 2007
Jay had a mixed night, he had fluid going into his IV all night so we didn’t have a great sleep as the nurse had to keep coming in and out all night. His temperature did spike up again but then came down after more medication. The Doctor said the fever isn’t anything to do with his stem cells, she said it was a cold. He is on antibiotics just in case, and had blood taken for testing. We have had a very boring day stuck in the hospital room, Jay is feeling a good bit better but still a bit unwell. I didn’t want to take him out of the room just incase he caught anything else. I didn’t get back to the hotel for my 2nd night, I didn’t want to leave Jay when he was ill. Julia stayed for an extra night in the hotel, it’s nice for them to get a break. This is the end of the 6th week, it has been dragging this past week and a half as we have been confined to the hospital. Hopefully next week will be better.
December 2nd, 2007
I can’t believe it’s December already, it doesn’t feel like Christmas time here. Jay had a good morning, he looked back to normal. I had a nice night in the hotel, it was nice to have a bed to myself as I have been sleeping in a single bed with Jay for the past six weeks. I had a swim but was very disappointed as there was a sauna and steam room at the side of the swimming pool but they were for men only, there was other ones but you had to go back to the swimming reception and across the hall but they didn’t open until 1pm and that ones didn’t belong to the hotel it belonged to another company. I had a long conversion with the help desk about why they supplied them for the men and not for the woman, they ended up saying they had a different culture to us, but it may change when the hotel gets revamped next year (for the Olympics I’m guessing). Jay got ill again at about 2pm, he went to sleep and when he woke he was sick, I took his temperature and it was high (39.5). He was given medication to reduce his temperature and given some fluid through his IV, his temperature slowly dropped but he has slept all day. Poor Jay being ill again, I don’t know how much more he can take. Thank you to everyone who is leaving comments, it is nice to know you are thinking about us. Jay liked the photos from school, it was nice for him to see everyone. I don’t think Jay will be getting his next stem cells on Tuesday, the Doctor is now saying she can’t confirm the dates. I also don’t think he will receive 3 injections in the time we have left. I said previously Jays red blood cells were high after his stem cell injection, I made a mistake it is his white blood cells that are high (the ones that fight infections). The Doctor told my mum that Jay would be worse for his next injection. (oh no! I’m not looking forward to that).
December 1st, 2007
Jay was fine this morning, he was eating and drinking well. I am now away to the hotel so today it very short. Granny is in charge for the rest of the day and night.
December 1st, 2007
Jay woke up at about 4.00am but went back to sleep on and off until about 7.30am, we got up and Jay had his breakfast, then we went to the computer room (for a change). Jay went to physio, he worked quite hard for Mandy. He also did ok for Lilly his OT, he didn’t want to lie down for his massage. Jay isn’t doing as good in his therapies as he was before the stem cell injection which is a shame. I hope he doesn’t get as ill for the next injection. Granny and Julia went to the supermarket.
We have booked a hotel for 3 nights to give us all a break, one person will stay in the hospital and the other 2 will go to the hotel, then we will swap over, we all get 2 nights each in the hotel, I cant wait. It’s me and Julia that go to the hotel tomorrow (how exited are we).
November 30th, 2007
Jay woke at 7.15am this morning and he feels much better, he had some juice and 2 bowls of cereal. Julia took him to the computer room and he was much happier, he didn’t want to lie down, so his head must be much better. Jay went to PT at 9.30am to see Mandy, Julia took him and said she was very surprised to see that Jay was doing so well, as this was the first day of him doing any exercises since his stem cell injection (Thursday). He took off his shoes with a little help, and he lay down so Mandy could exercise his legs and back, we bribed a little with some sweets, it helped. He did well for his first day after being so ill. When we had finished Julia took him to the computer room as he loves to get out of our room. After that Jay came back to the room and he had a sleep. Jay went to OT at 1.00pm, he didn’t do much for Lilly and he had TCM at 4pm, he was very good for this. It’s good to see Jay feeling a lot better.
November 30th, 2007
Jay woke at 6.30am today. We were told he hadn’t to have any food or drink until they took a blood sample. Jay’s red blood cells are high after his stem cell injection. They took the blood test about 7.15am and Jay and grandma went to the computer room. Jay wanted his DVD’s on today so he is feeling a little better. We then went back at 9.30am to the room and Jay had a little breakfast, which was good to see as he hasn’t eaten much for days. We then went back to the computer room where Jay is most comfortable. (It’s like a Living room, it has a TV, & sofa). Jay didn’t have PT or OT again but he had his massage at TCM. He still seems to have a sore head as he wants to lie down a lot. Julia and I went to Wal-Mart for a bit of shopping, it was really good to get out of the hospital. It was better day today.
November 28th, 2007
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