A Date At Last.

When Lucy had her operation and halo applied we were told it would be removed in six to eight weeks. Well, six weeks passed and she was given a CT scan to check how things were. Then eight weeks passed and we still hadn't heard anything from the hospital so I gave them a call. I was told that she would have an appointment as soon as possible. The appointment came through for 12th November!! That means she would have had the halo on for five months.
I called again and explained why I believed she should be seen sooner and was told that she (the secretary) would have a word with Lucy's consultant to see what he said and get back to me. Three days later I called again to see what the consultant had said to be told that he hadn't seen the message yet and she would make sure he saw it that day.

Surely, it shouldn't be like this? She is an eight year old girl, she should  be seen in the time limits given, I shouldn't have to keep calling and pestering just to get her seen.

Anyway, the secretary called back and Lucy will be going into hospital next Monday morning to have the halo removed.

Then we will see what she is like, how much movement she has lost, if her neck is straight, if all of this has been worth while.

If she is fixed.

We have changed our minds again and have decided that she should have a general anaesthetic when she has the halo removed. The points have become quite sore and there has been some weeping which has scabbed over. We just think that it may be just a little too painful for her to endure. We also believe that she's not as brave as she often makes out. Sometimes she is able to express herself more and we can see just how frightened she actually is. We want the best for her and taking everything into consideration we now believe that the after effects of the anaesthetic would be easier for her to cope with than not having any while the halo is removed.

With the turn in the weather it makes us think that Summer will soon be over. We have tried to make the most of it but with Lucy in her halo we've not been able to take a holiday, or visit the beach, or do many of the fun things that we see others doing with their children while the weather has been warm and sunny. We can't visit adventure parks or go on bouncy castles, we can't go swimming or play sports. We refuse to keep out of the public eye, ignoring the stares and constantly answering questions, why should she stay indoors.

Having a new car has been a godsend. It's so much easier, and more comfortable for Lucy to go out now. So even though things have been bleak at least we've had something good in our lives.

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.

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?