Thursday, 27 March 2014

So Your Child Needs A Halo!

When I was told that Lucy would need a halo brace I really had no idea what to expect. I found photo's by searching the Internet and was mostly horrified by what I saw and read.

I'm writing this post so that if any other parent finds themselves in the same position hopefully they will feel more enlightened, and not so frightened.

The halo looks like some piece of Victorian torture apparatus, but it really isn't that bad. It's not pleasant but in all honestly you do get used to it, both parents and the wearer.

Some of the things I thought about the evening before it was fitted.

What about her hair?

Lucy has long hair, I had no idea if they would shave any of it. I had no idea how I would be able to manage her hair once in the halo. I considered cutting her hair short. I really had no clue.

Well, generally, they do not shave children to fit a halo. The halo does not go all the way around the head, so if the child has long hair it can be brushed and styled from the back. For the actual fitting it is probably best to leave the hair down. I made the mistake of plaiting Lucy's hair and the screws were inserted through the plait causing it to be tangled. I'm so glad I didn't cut her hair, she didn't want me to and it would have been just one more thing for her to be upset about. 

With boys, things should be a lot easier. Short hair would be really easy to manage.

Washing the hair is a problem mainly because you can't get the vest wet. I've seen some photo's of people lying down on a counter while their hair was washed by someone else in a sink or bowl. 

I chose to wash Lucy's hair in the bath. I made sure the vest was covered completely by plastic bin liners and also managed to cover her shoulders with a hairdressers cape threaded through the bars of the halo. I washed her hair quickly to avoid her getting too wet, or the water seeping through the covers. 

What about her clothes?

The halo comes with a large, fleece lined plastic vest. There are bars and screws to consider. The shoulders and neck are hard to reach making dressing difficult. The vest does not cover the upper body completely, there are gaps at the sides. Also, it does not go right down over the waist so there will be a gap between the vest and the trousers or skirt.

I found that vests with spaghetti straps worked best. The thin straps were able to fit on the small space left on the shoulders. I had to buy them a couple of sized too big as the vest is quite bulky. We put them on from the bottom up. being stretchy was helpful too. I made sure the vests were long enough to cover her tummy.

Over the vest I found that blouses worked best. I guess shirts would work for boys. You won't be able to do them up to the neck so there will still be a gap. They will also need to be a couple of sizes too big. 

When going out in the cold we found the only way to cover her neck was by threading a scarf through the bars of the halo. This shouldn't be a problem in warmer weather.

Can You go Out?

For the first couple of weeks we didn't really take Lucy out. If we did we used a car. Once She was more comfortable with the halo we were able to venture out on public transport. 
A child wearing a halo has limited visability because  they cannot move their neck. They are also top heavy and it takes some time for them to gain their balance.
You shouldn't really go out if it's freezing cold as the pins can become very cold and they are in the skull. You should also avoid rain as it's difficult to keep the halo dry.

How Will They Sleep?

The simple answer is, just how they have always done...unless they sleep on their front. With Lucy it took her a couple of nights to get used to the halo then she was fine. She likes to sleep on her side and this is possible with the halo. The head doesn't touch the pillow, it is suspended. It doesn't look comfortable but it can't be too bad. Lying on the back is better because the halo doesn't  go all the way around and you can actually lie on the pillow. Even though the head is mostly not touching the pillow, it's still good to have a nice soft one. 
We found that for at least a couple of weeks Lucy couldn't turn herself over in the night, so if she became uncomfortable we had to go and turn her. Then she just started to be able to do it by herself, and get out of bed by herself.
The halo makes the child top heavy so it does take some getting used to but it's not impossible. I guess all children will be different and a younger child may have even more trouble mvoing around after lying down. 

This is how Lucy's slept

Can They Go To School?

We were told by the consultant at the hospital that it would be okay for Lucy to go back to school with the halo in place. I didn't really feel comfortable with this and decided to discuss it with her school. They were not too keen on having her there, they were worried she may fall or be pushed. So we arranged for  her to be sent some work to do at home. However, as the weeks progressed we decided the better option would be to apply for a home tutor. We have a very good school near us that provided home tutors for sick children and children who are otherwise unable to attend school for a period of time. This is what worked best for us. 

Does the Halo Hurt?

I've left this one until last because it is relative to the child. Lucy has a very high pain threshold and had little trouble with the halo. When it was first applied she was very distressed and had headaches for a few days. There were also a few times while wearing it that the points (the parts where the halo is screwed into the flesh and skull) were sore or hurt. However, she became comfortable very quickly and complained little. Another child might feel very differently. You have to remember that the the halo is heavy, uncomfortable and is screwed in. Also, the vest can be quite uncomfortable to wear and the skin underneath can become sore.
Lucy was very lucky, she had no infections at the points (which can happen) and no sore skin under the vest. 

There is one thing that is difficult to prepare for and that is how you will feel when you first see your child in the halo. I felt very distressed and a little nauseous. Lucy was also very distressed so I had to push my own feelings aside and not let on just how awful I felt. 
You really do get used to it pretty quickly though, it's not all bad.

Lucy stayed in hospital for five days after the halo was fitted. Before she came home she had to show that she could walk around the ward, walk up and down the stairs and I had to learn how to clean the points.

I hope this has helped a little if you have found yourself here because your child is going to need a halo. If you have any questions please ask in the comments or contact me.

Tuesday, 18 March 2014

Cock Robin

We had a hospital appointment today to see how Lucy was getting on after having her halo removed.
The Doctor straight away noticed that her neck was not straight. He asked several times when the halo was removed, I'm not sure why, it was two weeks ago, it seemed like he didn't believe me. He said that she had a xray on 3rd March and her neck was straight. I said 'yes, that was two weeks ago, when she had her halo removed.'

He took off her collar and asked her to look to the left, which she did (and grimaced). The he asked her to look to the right, which she couldn't do (and grimaced even more). He asked her if she was in pain, she replied 'a little bit' She hates admitting to being in pain for some reason.

Then he said he would need to speak to her consultant, but was certain that she needed a scan. So we waited around for a while. Then he got back to us and said that they couldn't arrange a scan until tomorrow so could we come back. On the way home I had a call to say we had to come in Thursday instead.

So, still no answers. We really don't know what is going on.

I have two theories.

1. The muscles are too week to hold her head up straight and that's what is making her lean. Perhaps if they can strengthen her muscles then she will be recovered.
I worry that maybe her muscles were lax in the first time and that's why the bones subluxed. In which case there may not be a way to strengthen them. I'm not sure what the answer would be if that was the case.

2. Her joints are starting to sublux again. In which case then they will need to find another way to fix her, if that's possible. It also means the last three months of enduring the halo have all been for nothing!
It also brings up the question, why are her joints subluxing all the time?

One thing that the consultant has mentioned in the past is fusion. The joints in her neck would be screwed into place to stop them from moving.

I hope it doesn't come to that, but I do want her fixed.

Thursday, 13 March 2014

Pin Wounds

When the halo is applied it is screwed into the skull to keep it in place. There are four pins at the front and four at the back.

This is what the pins look like when the halo is on.

I was worried about what sort of wounds would be left behind. If I'm honest I'm quite pleased because they are not as bad as I expected. 

The wounds are actually quite small. It's hard to tell from the photo but you can see that they are deep. Well, the pins did go straight through to the skull. There is a lot of healing to be done, outside and in, and the scars are bound to be lasting. I'm pretty sure they won't be too noticable though. The ones on the back of her head look slightly bigger somehow, but they will be covered by her hair anyway.

I'll be updating in the future on how the wounds heal.

Sunday, 9 March 2014

Six Days Post Halo Removal

I thought I'd give a little update on how Lucy is doing now her halo has been removed.
It feels a little strange, like we have gone back in time. Back to the beginning, when Lucy was first fitted with a collar, when she couldn't eat, sleep or move properly. She's been in so much pain this week it makes my heart bleed for her. Her neck muscles must be so weak, she can barely hold her head up in the collar. If I take it off she's in agony.

It's still early days yet though and I'm hoping and praying for improvement. Currently she can't get in or out of bed alone or turn over in the night. She can't lie down without help. She's having trouble swallowing and is barely eating or drinking. She has bad headaches and the pain in her neck has her grimacing constantly.

She's still not complaining much though. I'm giving her regular painkillers and asking her if she's ok. She told me tonight that it's best when she's in bed. I've given her a big plump pillow which is what the consultant recommended. It gives her neck extra support and she is comfortable....until she needs to turn over.

I gave her a bath. It was wonderful to not have to wrap her up in bin bags first. She could actually sit in the water, although she needed help getting in and out of the bath. I took off her collar to wash her hair but it hurt so much it was a very quick wash. Also, I was wary of her wounds so I had to use baby shampoo, and not rub very hard.

I haven't yet removed the plasters off her forehead wounds, she won't let me. The wounds on the back of her head are looking ok though, nice and clean. Just one is a little bigger than the others, this is the one that gave her the most trouble while the halo was on. She complains that they are sore and itchy, but I've not seen her scratch them. Fingers crossed they will heal quickly.

pin wounds
Today she had another bath. She was a little more relaxed than the first time. I took her collar off for a little longer and she didn't complain so much. I noticed that she is not moving her neck, to turn she moves her shoulders. This is understandable, she's not used her neck for three months, it's bound to take time to work again. A little more worrying was that her head is once again in the cock robin position. she is not holding it straight. I keep reminding her to sit up straight, and hold her head straight, but it must be so hard for her. I just hope that as her muscles get stronger she will be able to hold herself straight again.

Tuesday, 4 March 2014

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?

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