Yesterday we went to the hospital for a halo check. It wasn't a good experience, two of the screws had come out, although they were still in the skin. Most of the screws needed tightening. Getting it all tightened up again was a distressing and painful experience for Lucy.
When you have a halo then you should have the screws checked weekly. We were not told this at the start. We were given weekly appointments and at the first one they were all tightened, but they were not that loose. At the second appointment they were tightened again but the third appointment was during the Christmas holiday and there was no-one available to tighten them. Then for some reason we were told not to attend the following week. So this week it had been nearly three weeks since they were last tightened and that's why they had got so bad.
I was told yesterday that I should have attended last week, which is exactly what I thought and did phone up to ask, but nothing was done and we missed an appointment which we shouldn't have missed. If you are reading this because you or your child have been fitted with a halo, I will advise you to make sure you get them checked weekly, it really is necessary.
As well as having to endure this horrible experience we were also given the news that the halo wouldn't be removed any time soon. When we had the chat with the consultant before the halo was fitted we were told that they are normally on for six weeks. As we are approaching our six weeks in a few days time I had built my hopes up that it would be removed soon. It was quite deflating being told that it would be at least another two weeks and possibly another six weeks. I really do want the best for Lucy, this has to work and I wouldn't want to jeopardise her recovery, but I just can't wait for it to be gone now.
While at the hospital we were asked to meet a family who's son was having a halo fitted tomorrow. I was happy to do this and answer their questions as well as give them a few tips on how to cope. This is my aim, to raise a little more awareness so people know what to expect.