On Monday I brought Star into hospital to have a manipulation on her neck to try and get it straight again.
The day started fine, with Star settling in on the ward and having a lesson with the school teacher there. We had a chat with the consultant who told us all the gritty details of what they would be doing in the theatre, all the possible outcomes, what could go wrong and why they had to do it. It wasn't easy to listen too but we knew it had to be done. We signed the consent form.
Star was taken down to theatre around 1.30pm and we stayed with her while she was put under the anaesthetic. Then we left her.
Nearly three hours later the consultant came to speak to us. They had a few problems in the theatre, one being some soft tissue wedged between the misplaced bones, but they believe they've put the bones back. However, it was not as stable as they had hoped and so they fitted her with a halo collar while she was still under the anaesthetic. Then he took us to see her which was really difficult. Star was incredibly distressed and she looked awful.
The halo collar is to prevent her from moving her neck at all, it keeps it perfectly straight. The collar consists of a vest made of plastic which is lined with sheepskin. She cannot take it off. Around her head is a metal band which is screwed into her skull by eight screws. The band, or halo, is attached to the vest by metal rods. None of it can be removed by anyone but a doctor.
Star has been so brave but she really doesn't like the halo collar, who can blame her really? She knows it is screwed in and is totally freaked out by it. It's hot, itchy, uncomfortable, sore, heavy and just plain ugly. She will have to keep it on for six weeks, we can only pray that by this time her neck will be fixed.
I don't think we realised just how distressing it would be. We were told that the halo collar might be used but they couldn't tell us for definite before she went into theatre. Because she was in theatre so long we realised that it was probably because they were fitting the halo. I will never forget how I felt when we went to meet her and I saw it for the first time. I couldn't even cuddle her properly.
Star has never really been a cuddly person, but I so miss getting close to her, even kissing her is awkward, those pins could have your eye out! The first time I saw the wounds in her skull I felt like vomiting, but I had to hide my feelings so as not to distress her further. You soon get used to them though. I would be quite happy to clean them, which of course will be my job once she is home from hospital.
We tried to prepare her for the halo but we didn't want to scare her too much and of course we didn't know for sure it was going to be fitted. So we omitted the fact that it would be screwed into her skull. She didn't take this too well, who would? She still keeps asking to have it off constantly, but you can see that she is getting used to it.
She has also been feeling pain in her neck, just as much as before the manipulation, but that's normal. The pain will be controlled with drugs until she feels better. The first time she moved off the bed (to use a commode) she had a really bad shaking fit which was really scary. Just one day later though and she's helping herself off the bed and walking to the toilet. She would shake a little but she was determined to do it.
I thought that her neck would be straight but I noticed straight away that it wasn't. The consultant said they had over compensated so that she was slightly bent in the opposite direction. This is in case the bones decided to pull back. But what if they don't? I'm having trouble trying to understand this idea. I thought the halo was used to stop her neck moving after the manipulation, so how would the bones slip back anyway? I have to trust the doctors though, they obviously know more than me.
Today, day three and Star has been up out of bed a few times. Her teacher had her sitting at a table making cookies. I think Star was about three quarter's there, she was just going through the motions, but carried on without complaint and was proud of the end result, even though she couldn't eat more than a nibble. She was taken to the stairs by the physio therapist who made her walk up and down them, which she did without complaint but was happy to get back to bed afterwards. She didn't move again all day.
This is Star this afternoon, relaxing in front of her bedside tv.