Archive for November, 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
Jay felt slightly better this morning, he didn’t want to eat again, I took him to the computer room and he lay down and watched his DVDs, the Doctor said he would probably feel dizzy and have a bit of a sore head still that’s why he feels better lying down. Jay slept most of rest of the day. He didn’t have any PT or OT today but I did take him to TCM for his massage.
November 28th, 2007
Jay awoke at 5.00am and was still in a lot of pain, I called the Doctor and she gave him an injection for the pain, he still wouldn’t eat all day so I called the Doctor again and he gave him fluid in his IV to give him more energy, Jay was also sick today so I called the Doctor for that, he gave him something in his IV to stop him being sick. Jay likes someone to lie beside him at all times, it’s more tiring lying about than actually doing something. We all have stayed in the hospital since Jay has had his stem cell injection as he as been so ill. Jay has been so ill that he doesn’t even want his DVDs on. It wasn’t a very good day again, fingers crossed he will be better tomorrow.
November 26th, 2007
Jay was awake at 5.00am. He would not go back to sleep so Grandma got up with him at about 6am they got dressed and went walk-about the hospital. They ended up in the computer room as normal watching his videos but he was not happy, he was in a lot of pain. We managed to stay away from the room till 9.00am to give mum and Julia a rest. He was visibly in pain and the nurse sent for the doctor and again he was given an injection to relax his muscles. He slept for about 2 hours but was in lots of pain when he awoke and tried to walk. The doctor returned and gave him an injection this time for pain, he fell asleep for a few hours and seemed a good bit better. He was put on his IV when he was sleeping so when he woke up he knew he couldn’t get out of bed as he was attached to his IV. He has been kept in bed all day to help the pain. It has been a really long day as I’ve (Nicola) had to lie in bed all day with Jay watching the Singing Kettle (I’ve watched it that much, I’m dreaming about it). Jay is even off his food, he is normally a really good eater. Everyone else I have spoken to hasn’t had any pain where the injection was, some people get a bad headache, so I think Jay has a headache as well as a sore back. Jay missed out on a trip to an indoor play area for children today as he wasn’t well, it was organized by the co-ordinators at the hospital for all the children. Poor Jay I hope he gets better soon.
November 24th, 2007
Jay was awake at 4.00am screaming in pain, the nurse gave him a pain killer but the doctor had to be called, he was then given an injection and Jay fell asleep from 5am – 7.00am he did seem a lot better when he got up but he squirmed in pain when he moved a certain way. Trying to keep Jay resting most of the day was a nightmare. He wanted to go out of the room but he was very tired and would not sit down. He didn’t have any therapies today so the day seemed to last forever. This day was one of the toughest grandma has had yet. It was easy when you could go walking with him before the stem cells but when you have to try and keep him still, just is nearly impossible. I now know how Jay managed to overcome his prematurity and all the infections he had thrown at him when he was first born 13 and a half weeks early just weighing in at 2lb 2 ounces, it was his sheer grit in his nature that got him here where he is today and hopefully this sheer grit will get his stem cells working and get him walking better and communicating to make his future better for him.
November 24th, 2007
Jay had his first stem cell injection today, they came at 9.20am and took him to the operating theatre, he came back at about 10.30am. He then had to lie with his head flat on the bed for 6 hours (if you know Jay, you can imagine how hard this was). He was given a small injection to help him rest which didn’t really work. He continuously tried to get up, he eventually fell asleep at 2.30pm – 4.00pm, when he woke up he was in a lot of pain. I called for the Doctor, she gave him a pain killer and said it will hurt where the needle was put in. He settled for 5 minutes on and off for about 1 and a half hours, then he was in a lot of pain again, screaming with pain (not very nice to see) I called the Doctor again, she said he couldn’t have anymore painkillers as he had already had some, she also said it would be sore for Jay as they have to try several times to get the needle in the correct place as Jay had an abnormal spine. We managed to settle him for a little while. She said she would give him something to help him sleep through the night but that’s all she could give him. It has been a very hard day. It is now 8.00pm Jay has been awake for some time and if he stays in bed he doesn’t seem to have any pain. He has just dropped off to sleep now, hopefully he will sleep all night.
November 23rd, 2007
Jay had physio. this morning, Julia had him today, Jay was very tired today as he had been awake through the night, he got up at 2.00am and jumped into bed with his grandma he then got up at 6.30am, Grandma got up gave him his breakfast and took him out so Nicola and I could have a lay in. He did not do well in physio, he doesn’t like it as Mandy stretches the insides of his legs and it really hurts. We went for a walk round the hospital as Jay likes waving and sticking his thumbs up to everyone. Even though he plays up, he makes up for it as he has a very special gift, of making you laugh and gives so much love. Nicola went out today and bought him some new C/D’s to amuse him. But Jay was not all that interested. He is now having his IV, and listening to his DVD. He looks very happy at this moment but the noise from the dvd is very loud. I am now going to switch off and watch a video and have a glass of wine.
November 23rd, 2007
Jay had his therapies as normal, I think he’s getting really fed up with them all, he has to be bribed all the time to do anything. Nothing new to report today.
November 23rd, 2007
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