Free

Today Lucy had her halo removed (again)
We arrived at the hospital at 8am, she went to theatre at around 9.15am and was back on the ward by 10.15am

She was drowsy for a while as the anaesthetic wore off. She'd been waking a little and asking if the halo had gone, then falling back to sleep. The she'd wake again and ask if the halo had gone. Finally when she woke up properly she expressed her joy at not having the halo anymore and said.

"At last, I'm FREE!"

Then she started crying, which made me cry.

She had a collar on but the consultant had told us that she needed to take it off as much as possible so she could strengthen her neck muscle which hadn't been used for two months. Two months! It's been over 12 months that she's been in a collar or halo, the consultant can't see past the current situation which was removing the halo after two months.

We took the collar off and Lucy exclaimed

"I'm normal again" 

Then she started crying again, which made me cry again.

Truly an emotional day.

The Halo is Removed

On Monday March the 3rd, after exactly thirteen weeks, Lucy had her halo removed.

Daddy took her to the hospital while I got her sister to school. I figured I should just about make it to the hospital in time for her to come out of theatre. Thanks to traffic I was five minutes late, and Lucy wasn't happy with me. Not the best of starts, but she soon forgive me.

The removal was quick, probably only took about 20 minutes with her being under anaesthetic. The pin wounds are clean and look like they will heal quickly and well. I was told that with adults they do not bother with a general anaesthetic to remove an halo, but it's better for children because it's less distressing and less risk of the child moving or trying to move while they are taking it off.

I was surprised to see that Lucy's skin looked fine under where the vest had been all this time. You can't wash under the vest, just wipe with a baby wipe or damp flannel. I thought she might have been marked or wrinkly but she just looked normal.

Lucy woke up hungry and the nurse fetched her some toast and squash, which she devoured. She seemed a little quiet at first, which is understandable, but she was soon her smiley self.
At lunch time we were asked if she would like to go to the playroom as they were having party food for lunch. I got Lucy out of bed and took her to the bathroom before dressing her. It seemed strange putting 'normal' clothes on her again. She has put on weight, so it looks like I'll be shopping again. We walked the length of the ward to the playroom and Lucy chose some food. We sat at the table but she said she felt all wobbly and wanted to go back to her bed. I think she was out of bed a total of fifteen minutes. She did eat and drink a little more though.

The nurse caring for Lucy told us that she just had to have an xray, and drink one more glass of squash and she could be discharged. We went for the xray around 3pm by which time Lucy was feeling a little pain and looking pale. The nurse decided to take her in a wheelchair rather than make her walk. By this time I was getting worried that Lucy just wasn't doing as well as we thought. Her head was floppy and she was sticking her chin out, which is something she does when she's in pain. As usual, when asked if she was ok she gave her usual reply, 'I'm fine'

I have to say at this point that Lucy's nurse this day was really brilliant, she was so attentive and told us what was going on all the time. Despite being an incredibly busy day she never left us for more than half an hour and listened to everything we said. So when I told her I was worried that Lucy wasn't acting like herself, she actually listened to me.

The Doctor came around and said Lucy's xray was good and she could go home. He said she should be sitting up though, and not in bed anymore. So I took her out of bed and she sat in the chair watching some tv. Then her nurse came to take her candula out and Lucy started vomiting, everywhere, tons of it. She was crying and complaining of headache, not like Lucy to complain at all so she must have been feeling really rough. The nurse said to put her back in bed and we were to delay going home for a couple of hours at least.

Thankfully, Lucy wasn't sick again, and after a dose of medicine her headache cleared up and she regained some colour. She was refusing to eat anything, scared of being sick again. The nurse said she'd be happy if she just kept a cup of squash down.

At 7pm Lucy had perked up a little, she'd kept her squash down and was talking to me again. The Dr came and said it was ok for her to go home, so the nurse finished the paperwork and we got ready and left to spend the night in our own beds.

As we were leaving the ward, literally just about to go through the door, Lucy's consultant was just coming in and he saw Lucy and said 'no, no, no' My heart sank, I thought he meant he wanted her to stay in. He took off her coat and then the collar and carefully straightened her neck before putting the collar back on. Her neck flopped again. He said 'the xrays were good, her bones are straight, but they will come out of place again if she can't keep her neck straight. The collar she has is not strong enough to hold her neck straight, and Lucy's tendons are not strong enough. I'm not sure what is going to happen, but we have to keep telling her to straighten up and keep our fingers crossed that we can buld up strength in her neck to hold her head up again. She can't start physio for two weeks as it's too risky, so it's going to be down to us and Lucy to try and keep her neck in place.

We have been referred to a rhuematologist for Lucy's hypermobility. I want to know if it's her loose tendons that caused the slipped discs in the first place. I also want to know if it can be prevented from happening again. My biggest fear now is that it can't be prevented and Lucy has what is known as cranial instability...i.e. her neck isn't strong enough to hold her head. Only time, and the doctors, will be able to tell.

Is it ironic that the hospital uses zebra wristbands?

12 weeks, but still one more to go!

Well Lucy reached the 12 week mark of halo wearing but she's not having it taken off until next Monday. The good news is, this is definite, she had the first theatre spot booked for Monday morning.

Apparently, taking off the halo is not as bad as putting it on, phew. However, it is a long and uncomfortable process and in the case of children they prefer to do under a general anaesthetic. Lucy is fine with this, she doesn't like having a general anaesthetic, but who does? She is happy, however, that she will wake up without the halo. We are all really looking forward to it coming off. I'm looking forward to a cuddle with my girl.

We've just finished a week of half term here. This means Lucy has had her brother and sister around to keep her company. We tried to get out of the house and do some fun stuff, but we were limited. First up was a tript to the cinema on Saturday morning. We were there for the first showing at 10am and there were only three other families in the theatre. We watched Monsters University and all really enjoyed it. I wanted to go home for lunch, I do feel uncomfortable eating out with Lucy. Her dad says I'm being stupid, but in reality it can't be nice if you have to sit and eat your food opposite a child with a halo screwed into her skull, can it? I just remember my feelings when I first saw her in it, I felt sick. We can't forget that we are used to seeing it and it doesn't bother us anymore, for others it's more distressing.

I didn't win my argument and we went to Mc Donalds. We did, however, manage to find a quiet table right at the back of the restaurant. Yesterday we all had lunch in the hospital restaurant, I felt much more comfortable there!

Then on Tuesday we went to Toys R Us. This is a trip I've been promising the kids for a long time. They have been missing out on sweets and treats and saving up the money for a special treat. They managed to save £25 so I made it up to £45 so they could have £15 each. I was a little worried because there is so much in Toys R Us, and such a lot of expensive stuff. I really thought I'd have trouble on my hands as they rushed around the shop wanting everything in sight. It wasn't like that though, they were really good. The girls both wanted My Little Pony toys and Lucy really wanted the wedding castle. It came with two ponies, so I suggested that I bought it between them as it was £30. They agreed and were really happy with the idea.

We had to get to the shops by bus and again we had lots of stares, but also plenty of questions. I really prefer it when people ask what's wrong with her instead of just staring. Of course, after three months it's getting a little tiring explaining it over and over, but I'm still glad that we've been asked.

We didn't get to go out again. Lucy does find it really tiring, and we end up having very disturbed nights as her body catches up with the exercise she has taken. Thank heavens for Junior Ibuprofen and wheat bags, it's the best way to stop her pain.

She's had a lot of pain in her neck too which has been very worrying. We even had an impromptu visit to the hospital at one point when her screw came loose and I found blood in her hair. It was ok though, soon sorted. The pain seems to have eased in the last week though, so fingers crossed everything will be ok when the halo is taken off.

Just one more week to go...YAY!!

The Importance of Keeping The Points Clean!

It's been seven weeks now since Lucy had her halo fitted. Before we left the hospital the nurse showed me how to clean the points, or the wounds where the screws enter the skin. It is a fairly simple procedure, we have to clean each set of points with one clean piece of cloth and then dry it with another. At first we were given some cleansing solution, but when that run out we were told to use sterilised water instead. When the little cloths ran out we used cotton wool pads. The points need to be cleaned daily.

I have to confess, the past week or so I've not cleaned them daily. Not a good idea. Just before Lucy's bedtime yesterday she told me she could feel something on one of the points. I took a look but it was hard to see because it was one of the back ones which is covered by hair. So I cleaned it and found it was covered in dried blood and gunk. Of course I cleaned the rest of her points too. Then this morning when she got up, one of the points on her forhead was oozing gunk. So now I'm being extra vigilant in keeping them clean and she will have to go the hospital if it doesn't stop in the next 24 hours.

This morning I gave her a bath.
I use a black bag and wrap it around the vest, tucking it in at the neck and sides and finally rolling it up under the vest at the bottom. Then I cover her shoulders with a waterproof cape that I use for protection when dying my hair. She sits on a small seat in a few inches of bath water and I was her down, well the bits of her I can actually see. Then I wash her hair by pouring water from a cup. The shower would be too powerful and we might get the vest wet. She cannot hold her head back with the halo on, so I have to be careful. We use baby shampoo on her hair, not ideal because it really is for babies and not much use at all for getting an eight year olds long locks clean. The hospital suggested baby shampoo, but I'm thinking I might try some Simple shampoo instead, something really mild and gentle but actually meant for washing hair, not baby fluff.

Lucy likes to suck on a flannel while I wash her. This is because she gets some sensory comfort from it and it distracts her from my washing. It doesn't hurt her washing her hair, but it can be uncomfortable and feel strange. It's like when she was a baby and hated having her hair washed, I would give her a flannel to suck on then.

After her bath I have to make sure that both her and the halo frame and vest are completely dry. I can use a hairdryer so long as it doesn't get to hot. I was quite happy that her points were really clean afterwards, although her forehead needed a little attention to get clean while in the bath. I'd really hate for her to get this far and end up with an infection.

We've still not been given an appointment for her CT scan yet, I hate waiting on the hospital to call, although I have to say the radiology department are usually pretty good.

The pain in her groin is still there, but it comes and goes and doesn't seem to be bothering her too much. She doesn't seem to be getting many headaches now either which is good. She can also get out of bed by herself now, she just wriggles her way to the edge and lowers her legs with the momentum giving her the strength and balance to lift her upper body up.

two of the points

Moving Forward

We had another hospital appointment today. It's amazing how quickly you become familiar with a hospital, well I say quickly, we've been going there for nearly six months now! Lucy has her appointments on the ward where she stayed, now as soon as we go in the nurses and helpers all know who she is.

Today we saw one of our favourite consultants. I know you shouldn't have favourites, they all do a very important job. However, there is always one that seems to listen more, take more interest and remember things better. This doctor has promised to get us a referral to a rhuematologist so we can find out what type of hypermobility she has and get a proper diagnosis. I know that in the long term the actual diagnosis is not relevent, but it will give us some answers and allow us to find the right support groups. There is no cure, no real treatment, all we can do is manage the symptoms. Of course, with a diagnosis it will mean that if Lucy has problems in the future the doctors will know where to begin. It took a long time for them to take us seriously this time, it was as if they didn't really believe that Lucy had anything but a crick in her neck at first.

Today's appointment went well. There was not much tightening to be done which pleased Lucy. She has been complaining for a couple of days of a pain in her groin area. She told the doctor and he examined her. I didn't think he would because I thought the pain was nothing to do with her neck. However, it turns out that it's possible for her lymph nodes to swell, which could be connected to the lymph nodes in her neck. She could also have pain there because of the restriction of the vest. People see the halo and think that it looks uncomfortable, but the vest is just as bad. It is fixed tight around the abdomen and can be tight under armpits too. If it gets too bad then the doctor (and only the doctor) can release it a little. Anyway, Lucy is ok at the moment, we just need to keep an eye on her and get in touch with the hospital if it gets worse, or doesn't get any better.

people don't realise that the vest is uncomfortable too.

Next step is a CT scan in a couple of weeks time. Then if all is well they will take away the halo. I asked about the procedure for taking the halo off. Normally, for adults they just take it off with a topical anaesthetic, but it does take a long time and can be distressing. For children, they prefer to give them a general anaesthetic. So Lucy will go to sleep and wake up halo free. We can't wait now.

Hospital Appointment

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.