Sometimes the Road can be Rocky

Right from the beginning things have not been plain sailing with Lucy's neck problems. It took more than two weeks of regular A&E visits before they actually realised what the problem was and admitted her. She was sent home after a week with  the promise of a six week check up to see how she was doing and regular physio therapy. The physo therapy department were great and Lucy was seen every week at first and then twice a week when she didn't seem to be getting any better. The six weeks came and went and I tried to get her a follow up appointment with the consultant but to no avail. The physio thereapist contacted the consultant with her worries but still nothing. Then I contacted PALS the hospital patient liason support team and eventually, after twelve weeks, Lucy got her appointment...for a CT Scan. I was so fed up at this point my plan was to go for the scan then to go and sit on the ward until the consultant agreed to see us. However, I did not have to make a nuisance because the consultant turned up at the scan and then talked to us afterwards. That's when Lucy was admitted for the manipulation.

After another week in hospital Lucy was sent home with weekly appointments for the next four weeks. I had to call and make appointments for the next two weeks. Then at the last appointment I was told she would be sent for another CT scan and if that was ok then they would take her in and remove the halo. The CT scan was supposed to have been this week. Today I called radiology to ask why they hadn't sent her an appointment and was told that the instruction was to see her in six weeks!

So what were we supposed to do for the next six weeks with no appointments booked? The halo was supposed to be fitted for 8 to 12 weeks, it's been 8 weeks already, another 6 would take us to 14 weeks. Also, the screws are supposed to be checked and tightened every week. It's just like before, they've forgotten her again.

Last week we had some discharge from her points, it did stop so I didn't fuss. This week Lucy has been experiencing more pain than usual. I've already called the hospital and they promised to call back but didn't. I can't wait for PALS again, I will have to go to the hospital and make a nuisance of myself until she is seen. Why does it have to be like this? Why do they seem to have so little regard for an eight year old child?

We often get asked, how does she sleep?

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.

Living With a Halo - part two

Another post taken from my other blog about how we are getting on with the halo.

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My Lucy is a real trouper. She is coping so well and I'm so proud of her. We had a hospital appointment yesterday where she went to have all her screws tightened up. They also gave her an x-ray and things are still looking good. Her Daddy got to see the scan pictures all in order from the start and was a bit shocked at how bad it actually became before they did the manipulation. Thankfully things are looking much better now. It's still not perfect because the consultant over compensated, but he insists that it will go back once the halo is off.

Sleeping has become easier for Lucy. It's probably down to just getting used to the halo more than anything else. She only has pain relief when she asks for it, which is usually last thing at night and first thing in the morning. She has really adapted to wearing the halo and never lets me forget to clean her pin points regularly.

We have found a way of washing her hair.
First I put towels around the edge of her sheepskin. Then I cover her with a black plastic bag. Then I use a plastic hair dressing cape across her shoulder bars.
I put the Little Man's step in the bath for her to sit on. Then I wash her hair trying to use as little water as possible.
It's not easy but it gets the job done and so far we've not got the sheepskin wet.

Clothes are still a problem but we've found that spaghetti strap vests that are a couple of sizes too big will go up from the bottom and stay on her shoulders. They manage to keep her tummy and side bits covered up.
Then we can put button through cardi's or blouses over the top. Luckily there is not problem with her wearing her normal jeans and trousers. I did buy her some dungarees but she's not keen on them.

We took her to her school for the Christmas concert and they all made a fuss of her. We even had seats reserved for us at the front. We may consider sending her back to school after Christmas for a couple of mornings a week.

Living With a Halo - part one

This is a post copied from my other blog which I've decided to include as it explains how we have coped with the halo.
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One week on from Lucy's operation and we are learning how to cope with the halo. Just over a week ago I was thinking of how I would cope with Lucy's long hair if she had the halo fitted (it wasn't definite then) but now I see that really was the least of our problems.

 Starting with the hair though, it really isn't too bad. The halo doesn't go all the way around the head, there is a gap at the back, perfect for reaching the hair and putting it in a plait or pony tail. We do have screws in the side of her skull which means hair brushing is difficult, but it's not so impossible to keep it tidy. Also, I've been told that it may be possible to wash her hair next week when the pin point wounds have healed more. We just have to find a way of doing it without getting the vest wet.

 Now, our biggest problem is clothing. I didn't realise just how big the vest is, both at the front and the back. And the bars come right down onto the chest making putting clothes on almost impossible. So far we have managed to fit her in a cardigan which just covered her arms and fitted around her back. So I tried one of my bolero type cardis which has a fastening at the front. It just about does up at the front but tends to slip off her shoulders. The other day I took an old vest top apart and sewed on some ribbons to see if I could adjust it to fit around the vest. I had a little success, although the vest was way too small. I think with a larger vest it just might work but it's going to look weird. I've ordered her some dungarees, and praying that they fit. They seem the perfect solution as they open up at the shoulders. Also, they are adjustable at the sides so we could just leave them open if they don't fit over the vest. Fingers crossed they do the job.

Another huge problem is getting out, especially to hospital appointments. I currently don't have a car but I would so appreciate having one right now. We can't really take her on the bus, it just wouldn't be safe for her, I'd be scared of her bumping into one of the bars, or someone else. The ride can be quite jolty too, even if I ask the driver to stop while she sits down or gets off. I think she could cope with the stares, we're kind of used to that with her having to wear a collar for so long. However, the halo is unpleasant to look at and I wouldn't want to distress anyone on public transport. Taxi's are a good alternative but so expensive, and we don't exactly have a lot of money right now. I've tried to find some hospital non-emergency transport but so far had no luck. I'm managed to get two offers of lifts from friends and family, that leaves four journeys until the halo is removed. Also, I can't really take her anywhere else. We have been invited to see a play at the town hall at Christmas but I have no idea how to get her there.

Now, I'm quite used to not having much sleep. The Little Man has only been sleeping through the night for a short while, and Lucy has never been a good sleeper anyway. However, I'm finding looking after her during the night a big strain. She calls out to me often needing me to turn her over, or rub her knees (this is usually what keeps us awake) or give her painkillers, or just comfort her because she's distressed. This is happening all night long and I'm lucky to get an hour in-between. I do hope she settles more as she gets used to the halo, for both of our sakes.

Other things we've had to get used to are;
Cleaning the pin points. I found it quite hard at first, but now I don't think too much about it and just get it done. The ones at the back are the hardest because you can't see past her hair, but I'm so glad they didn't have to shave her.
Washing. We can't get the sheepskin under the vest wet, so no showers. She can have a shallow bath, but to be honest, I'd be terrified of her getting in and out, she's not the best at this without a halo. So it's wash downs. And we can clean under the sheepskin with baby wipes. I'm dreading what her skin will be like when it comes off.
Stairs. Lucy has always been a little awkward on the stairs and now it's ten times worse. Now she has to balance herself and has limited vision. I have to follow her every time she goes up, and come down in front of her just in case.

The halo is big and hard, I'm already sporting bruises on my arms and shoulders from it, and every time I go to kiss her it feels like I'm close to losing an eye. It's really not a kind or friendly contraption, hugs are out of the question. Also, when you collide with her, and believe me we are trying very hard not too, you worry about hurting her, although she hasn't complained yet.

On the plus side, and it's really hard to find a plus side, lucy has been brilliant. She hasn't complained much at all It has to be uncomfortable, and sometimes I watch her facial expressions and know she's in pain, but when I ask she says something like "it doesn't hurt too much, mummy" She's a proper trouper. I really hope this is all worth it and she comes out of it fixed and pain free.

Lucy's History

I'd waited an awful long time for my little girl, it felt like a miracle when I finally fell pregnant and stayed pregnant. She then came early, but only a couple of weeks so was classed as full term. I had her at 8pm but wasn't taken to the ward until around midnight. I didn't sleep that night, I just kept looking at my little girl, not quite believing she was here.

She cried a lot as a baby. We believed she had colic, each evening she would scream relentlessly for at least two hours solid. Then at three months old she calmed down. She didn't sleep through the night though. She still doesn't at eight years old.

We had trouble toilet training her. She just didn't get it, despite all our efforts, and we tried everything. She would simply scream the second we put her on the potty or the toilet. She started nursery at 3 years and 3 weeks old and I thought I could get away with putting her in pull-ups, but they said no. We had to keep her home until she was trained. Eventually, we managed to get her to sit on the toilet. She screamed, but then she pee'd, and that was it. After the first 'hit' she wanted to do it again and again. The number two's were a different story though. At eight years old she still doesn't go on the toilet. I've mentioned it to several doctors but they have not believed it to be a medical problem. I've tried everything, believe me, I could write a book on all the methods we've tried, but I am more and more sure that she's just not feeling it. She does not feel the need to go, and does not feel it come out, I'm sure of it. She gets so upset when she's messed herself. We've stopped being angry, but we'll never be resigned. We will keep on going, and I will keep on asking doctors. Maybe one day she will feel it differently, or maybe the right doctor will tell us why.

For as long as I can remember, and as long as Lucy has been able to tell me, she has been getting pain in her knees. Mostly at night, but sometimes during the day too. The pain is bad and requires me to massage her knees as well as a dose of pain relief. We also use wheat bags warmed up on her knees, but these are not always practical as they fall off while she's asleep. I've told the doctors and she did have x-rays. They found nothing but did point out that her joints were hypermobile and this could be a cause of the pain. She sometimes has trouble walkings, even the walk to school is too much for her some days and we either have to walk very slow, or she has to stop and rest. Some days she is fine and can walk and run just like any other child.

Lucy has also suffered from really bad headaches, at one time they were getting quite regular so the GP gave us beta blockers to take on a daily basis for a few months to break the cycle. They did seem to work for a while, but she still gets headaches.

When she was at nursery her teacher said she had problems playing and working with the other children. She thought that maybe she showed signs of autism. At three years old I thought that maybe she was just immature but I'd been here before with her older brother. I'd buried my head in the sand and convinced that he would grow out of it. He never did, and I knew Lucy wouldn't either. I did leave it for a couple of years though. I wanted to be sure that there was something wrong before I sought a diagnosis.

At six years old Lucy was diagnosed with high functioning autism. Her teacher at the time was brilliant, she researched everything she could to make Lucy's life easier at school. Lucy had extra help at school from the autism team. She had occupational therapy, speech therapy and physio therapy. She was coming along brilliantly.

Then this summer things went pear shaped. She hurt her neck, we moved house and school and now all the help she was getting has to be set up all over again. Of course with her neck it means she has lost a lot of time at school. I hope that this year we can remedy that and get her back on track. We only have a couple a years before she has to start secondary school and the real trouble begins. I can't afford to let her slip now.

My plans for this year are:

• get her a proper diagnosis for her condition so that if anything like this happens again the doctors will know what they are dealing with.
• liaise with her new school so she can have her support system in place again.
• work with her to catch up with the other children on her actual school work