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.

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.

Now it's Time to Recover

Lucy had her second operation yesterday morning. She went down to theatre about 11.30am and was asleep by 12, we went straight to her as she came out of theatre at 6.15p.m. Waiting for your child while in theatre is the most surreal experience, you go through a plethora of emotions. Then when they take longer to come back than you expected, we were told four hours, you start worrying, really worrying.

We were told that they were performing a fixation of the C1 and C2, this means two small screws in either side and a small titanium plate joining them up to keep them perfectly straight. This means that she won't be able to turn her neck as much as before. I'm sure she will cope, she hasn't been able to turn her neck for the last ten months anyway. We were also told that she might need a further plate on the occipital joint at the base of her skull which means that she wouldn't have been able to look up or down either. Again, she hasn't been able to look up or down for the past 10 months. However, once in there they decided that they wouldn't need the plate on the occipital joint. They were not happy with the C1 on the left side, the bone that had deteriorated, so they performed a bone graft from her skull and added it to the C1 to give it more strength.

We had been told that if they were happy with the fixation then she would not need the halo back on, however, because they had to do the bone graft she needs the halo back on until it fuses, so it will be around six to eight weeks before it comes off. Such a shame, we'd have liked to have been rid of it.

Lucy was back on the ward by 7 p.m. and she was really sleepy from the anaesthetic and the morphine. She had a drip for fluids and a catheter, so no need ot move or bother her, she just had to sleep it off. And sleep she did, all night and all day today. She did wake for short periods, but struggled to stay awake and went straight back to sleep. She woke in the night during obs. and wanted to be turned over. She became quite distressed so the nurse pushed her morphine button. She had morphine constantly pumped into her but she also had a button to give her a little extra if in pain.

She got a bit panicky when they came to take her blood. She has developed a real hatred of needles. Then she was distressed when taken for a CT scan but only because they had to move her from her bed to a trolly and back again. In between being moved she was ok. She says she is not in pain, but I think that proves that she is hurting.

Tomorrow, she should be more alert and we will need to move her, at least get her sitting up. She also has to have the halo vest altered because it's too high up.

Her stitches will be removed in ten days time.

Overall, it all went well. They didn't hit any problems other than her suffering a big loss of blood and having to have quite a hefty transfusion.

We have to hope now that it has all been worthwhile and her head stays upright. She will never be able to move her neck normally, but at least she will be safe, comfortable and hopefully pain free.

One Down, One to Go

The last three days have been a complete emotional roller coaster. First, Lucy's operations were moved to different dates, then they were postponed altogether, then yesterday afternoon we had a call saying it was all back on and could we bring her in immediately.

So we arrived on the ward and had a nice little cubicle, Bed no1. We had a fairly good night despite it being a very noisy ward. So many crying children, it's difficult to ignore them.

This morning Lucy was a little panicked. We had told her that she was having the halo back and she'd been ok with it. She was ok with it last time, she dealt with it much better than us! However, this morning she decided she didn't want it back and was distressed.

By the time we took her down to be anaethetised for theatre she was really upset. She screamed when given the canula, and gagged and sobbed as the anaesthetic was administered. It was very distressing.

The manipulation and halo application went really well and took nearly an hour shorter than last time. We could see why when she got back...four screws instead of eight? Also, her neck is not very straight. Still it's just a temporary measure until the next big operation.

On Wednesday she will go back to the theatre, hopefully she'll be keeping her canula in until then so no big needles. The will open her neck and attempt to screw her bones in place along with a metal plate. To create a better fusion they will also had some bone graft, taken from her thigh or her skull. She is going to be hurting afterwards for sure.

Once they have completed the fusion they will decide whether or not to keep the halo on for a while. She could be coming home in five to ten days after the operation depending on her recovery.

During the time leading up to operations you feel so anxious, so worried that something may go wrong and that you will be leaving the hospital without your child. You don't want to think that way, but you know it's a possibility and it hurts to even think about it. Then while your child is recovering on the ward another little patient loses their battle and your heart starts pounding and the pain feels so real even though you know it's not your child. Then shortly afterwards, yet another patient loses their battle. And you cry, you don't even know these children, but you know it could so easily have been your child and you feel the pain of the parents an family, you feel their loss.

Having a sick child is so emotionally draining.

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.