I started today with great expectations, it was Star's fifth hospital appointment since her discharge and they told us that the halo was to be fitted for six weeks. Last weeks appointment had been cancelled by the hospital. I'm not sure why, they just said come in two weeks the week before. I was confused because we'd been told that the halo needed checking every week. I did call to ask but was just given a new appointment, which was today.
We decided to brave the bus into town. Star has been on the bus a couple of times now so I thought she would be okay. Her mood was not good from the start though. For some reason she didn't want to go to the hospital and wasn't being very co-operative. I finally persuaded her by allowing her to take the Mobigo to play with. Once out she was a little better, although she was very wobbly on her feet and complained of her knees hurting.
At the hospital we have appointments on the ward were she was confined. She went straight to the play room, took off her shoes and snuggled up in the giant beanbag with a book.
When we were called in by the Dr she took the book with her but refused to put her shoes back on.
The book turned out to be a lifesaver, so to speak. On examination the doctor discovered that most of her screws in her skull had come lose and two had actually worked themselves free. I had a feeling that they were not right because the night before I'd managed to de-tangle her hair for the first time since she'd had the halo fitted. I am not a doctor though, there was not way I could tell the screws had come out unless I pulled them because they were still in the skin, just not the skull. I was told the reason they had come loose is because they had been left too long and I should have attended the week before. Nice one, make me feel guilty for your mistakes!
So, the screws had to be replaced and this was done by the doctor while the nurse and myself distracted Star with her book. Of course the two bad ones were too much for her and the tears came fast. Looking back now the whole experience makes me feel sick, but at the time I just held her the best I could and comforted her the best I could. That's what mum's do isn't it?
So when it was all done, and the screws on her vest were tightened the doctor arranged an appointment for next week. So then I asked when the halo would be removed and he said it would be another two to six weeks yet. He said it was at six weeks when they started regular CT scans and they would only consider removing it when they were happy.
I left the hospital feeling completely deflated. Of course I want it to work properly, when they take it off I want her to be fixed. Still, it's like anything that is horrible, you count the days until the end, and I really thought the end was nigh.
Star didn't really understand what was going on. She became quite sick on the bus on the way home and at one point I really thought we would have to get off for a while. But we made it, and since being home she has been okay. She complained of a headache just before bed, I'm surprised she didn't complain earlier, I know I would have. I gave her some Ibuprofen and she wasn't long gong to sleep.
Now it's time to get practical. I spoke to the hospital teacher this morning and she told me to contact her if Star was going to be in the halo any longer and she would arrange for some teaching for her. I had mentioned to the school headteacher that I was concerned about her lack of schooling and she didn't seem to keen on having her in the school with the halo still on. I was concerned anyway because a lot of the children at the school are boisterous and I'd be worried about her getting hurt. To see the head teacher with concerns makes me convinced that she shouldn't go back just yet. So she will need to continue her education at home. I'll be teaching her until we get some help.
I will need to buy her some more clothes. She has received some lovely clothing gifts from kind friends and I've bought her what I can, but to be honest it really is a pain finding suitable clothing that fits. Not only that but the vest has ruined a few things too, it has lots of jagged bits that work their way through the clothing.
I am going to try and come up with some sort of home-made cover for washing. Our current method is time consuming and Star really doesn't like it. What I need is some sort of plastic bag vest that is shaped just right, something we can slip on and off easily.
We did do something helpful today. On arriving at the hospital another consultant asked us if we would speak with a family who's son is having a halo fitted tomorrow. They had no idea what it was and the consultant though it would be helpful if they could see Star and speak with me. Of course I was happy to oblige. I've found it so difficult to find information on Star's condition and even the halo so I have a wish to enlighten other's who will find themselves in the same position. This is why I've started up a new blog all about Star.
So we spoke to the family. They looked at Star and I told them what to expect and how do deal with certain things, like clothing and bathing, the sort of things I've had to work out for myself. I hope that I have helped them in some way.