Friday, 18 July 2014

Looking Forward!

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.

Sunday, 13 July 2014

Halo Wearing - Summer Versus Winter

I wrote a post all about halo wearing back in March. It answers many of the questions asked about halos and what to expect.

I'd just like to add a few comments now on the differences between wearing a halo in the winter and the summer. Lucy had her last halo fitted from early December until late March. It was very cold but the vest is sheepskin lined so it kept her body warm. Unfortunately the sheepskin vest does not cover all of the body. The head and neck are exposed and because of the nature of the halo it is very difficult to cover these areas up. We did manage to thread a woollen scarf through the bars of the halo on really cold days which helped to keep her neck warm. There is no way of covering the head though, hats are out of the question. You can use an umbrella in the rain, but we found that the halo would keep getting caught on the spokes. We tried one of those dome shaped umbrellas but it wasn't much better. You are not supposed to get the halo wet so we found the easiest way to do this was not to go out if it was raining.

The halo vest does not cover the tummy and it is difficult to get clothing over the top. We managed to dress Lucy in a stappy vest under a shirt or button through cardigan a couple of sizes bigger than her regular size. Even then it was not possible to do more than two or three of the bottom buttons up and often the shoulders where uncovered apart from the halo vest. We found a big coat she could wear, but again couldn't do it all the way up for maximum coverage in the cold weather.

Apart from not getting the halo wet, it's also advisable not to go out when it's too cold as the points that enter the skull can get very cold and cause the wearer pain. This only happened to Lucy once, we did try to avoid taking her out when it was too cold.

When Lucy had the halo put on a second time it was in June. We have since had some really warm and sunny weather. So, no worries about covering her up and it hasn't rained much here either. It's not all good news though. We've found that Lucy has more headaches on sunny days. We are not sure if the halo is the cause, but she didn't really have so many headaches before it was applied. Also, the sheepskin vest is very warm. We've only been dressing her in her strappy vests, but she's still too hot and itchy all the time. It's even worse at night time when she's trying to sleep. She is just too hot.

We have had to be careful that she hasn't spent too much time in the sun so she doesn't get sunburnt or heatstroke. This time she also has a partially shaved head and healing scars. We can't put a hat on her or completely cover her in sun protection lotion.

Basically, halo wearing affects your life in both winter and summer. It's just as difficult to keep cool as it is to keep warm. Ironically, Lucy's summer halo appears to have much more sheepskin than the winter one. The summer one covers her neck a lot more, whereas the winter one left her neck exposed to the cold.

We are trying to keep things as normal as possible, and using Lucy as a guide we are getting out when we can, just not for long.

Wednesday, 2 July 2014

Three Weeks On

It's been three weeks since Lucy's second operation and she seems to be coping well. We still have the anaemia, the consultant told me to take her to the GP for regular blood tests and some iron supplement. She won't take the iron it makes her really sick, and it doesn't help her constipation. So we are going with a homeopathic remedy and lots of iron rich food, her current favourites are broccolli and Heinz Spaghetti Hoops (one of your five a day with extra iron! so the advert goes, and she saw it so she'd rather have Hoops every day!) We'll see how she goes.

She's getting a fair bit of pain in her neck, but it's still early days yet. There was some major stuff going on in there when they operated and it's going to take some time to heal. The scars are nice and clean and healing well, and her halo points are fine. We are really lucky that she manages to avoid infection. 

She gets tired a lot, although she's become more awkward at bedtime too. I think maybe she's uncomfortable and can't sleep properly. The heat lately hasn't been helping much, she's wearing a sheepskin vest all the time! Of course the anaemia can be a cause of tiredness too and can also cause itching, which she is getting a lot (And not just under the sheepskin vest)

I think that considering she's just three weeks post op. she is doing really well.

It's also nice that she now has a real nice team looking after her at the hospital. I really don't like to complain because I know they all do such a good job, but the last team that cared for her constantly made me feel as though she was a burden. If I called them because I was worried about something I was abruptly brushed off. Appointments were rushed and often I had to pester them for the next appointment because they hadn't made one for her. They didn't seem to take any of my fears or worries seriously and I often felt that had she had a brain tumor or something then they might be a little more interested in her, it was like a broken neck wasn't enough. 

Her new team are so much more considerate. The appointments are made regularly and we are never left waiting. When we go in they take their time to make sure she is really is ok and show that they are concerned. They ask me lots of questions and I never feel like I'm pestering them. They are all considerate from the highest consultant to the nurses on the team. I don't know why Lucy was switched from her old consultant team but I'm so glad that she was. 

healing wounds, this is the one where they took the bone graft. 

Three Flare ups and a Catheter Change and all in the first month of the year.

 My poor girl has really been through a lot this month. She has had three flare ups of severe diarrhoea . One attack was pretty awful I was ...