Today I've been watching You Tube videos of young people having their halos removed without anaesthetic.
When Lucy was having her first halo removed the consultant did say that he could do it with her awake but they liked to anaesthetise children because it can be a traumatic experience. Currently, Lucy is having her most worries over having anaesthetic again. She always feels so poorly afterwards, and although we have tried both the gas and the injection, neither has been any different afterwards. She doesn't want her halo off because she doesn't want anaesthetic, so we are considering having it taken off without.
She goes to the hospital every week to have the screws tightened, both the ones on the vest and the ones in her skull. The Doctors are always amazed at how well she copes with this. I've been checking out the comments of young people who have had a halo and they have said that having the screws tightened is really painful. I know Lucy finds it difficult to express how it feels, and we have had some tears at times, but mostly she copes really well. So would she cope having it taken off? Well, it's something we are thinking about, we don't even know if the consultant would agree, and right now Lucy isn't so keen either. I hate having her pumped with such horrible poison that makes up anaesthetic.
Lucy has had two hospital appointments this week. The regular one to tighten her points and check up. We were worried that one of the points had become inflamed, but I bathed it carefully and regularly and it seemed to have cleared up loads by the time we went in for the appointment.
Then Lucy had another CT Scan. She is so used to these but this time there was a new machine and it threw her a little. Also, there was a very strong smell, I thought it smelt like new plastic, but Lucy assumed it was anaesthetic and started to gag. We managed to survive the scan though.
Now we just have to wait for the consultant to examine the CT Scan and then give us a date for removing the halo, it could be very soon. It will be amazing to get my little girl back again, but it's also a tense time to see if this last operation has worked and how much movement she will have. Looking back to when she had her last halo removed I had no reservations, I just assumed it had done the job and Lucy's neck would be fixed. It was a harrowing moment when I saw her head flop just a few hours after the removal. I'm am praying hard that this has finally fixed my little girl.
I started this blog as I wanted a place to write about help for halo wearers when my daughter had to wear one twice in 2014. Since then, I have become disabled and my daughter has ongoing problems. I am now using this blog to share our experiences throughout our journey through this life that has chosen us. You will find all kinds of information on our many conditions and ailments. We are zebras in the medical world, United here in our space on the internet.
Subscribe to:
Post Comments (Atom)
Sorry For Not Updating Sooner but it's been a bit Poo!
Last week we finally got to see a consultant at the adult hospital to proceed with her treatment. Last year she was told she'd be refer...
-
Last year we had a letter from the school about a residential trip that is taking place in February. I threw the letter away, my first inst...
-
I've realised that I've focused a lot on Lucy's problems in this blog and I have kind of neglected talking about her autism. Thi...
-
We had Lucy's hospital appointment on Monday. She was a bit disorientated going to different part of the hospital, when we got there she...
No comments:
Post a Comment