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?