Monday, 26 August 2013

Lucy's Neck part four

Lucy spent a while in hospital because they had decided to put her on traction, but they were having trouble locating a traction bed for her. They sent her home for the weekend and told us to be back for 9am Monday morning. The traction bed was waiting for her, but they changed their mind again and discharged her. An appointment was made for a couple of days later where they told us they were considering manipulation (again) Lucy had her physiotherapy and we had lunch while waiting for the consultant. A couple of hours later and he'd changed his mind again and had asked someone to come up and measure Lucy for a different collar. This one will actually correct the bend in her neck rather than just support it. It's probably the best idea he has had yet, so hopefully this will be it, and I will be praying that it works.

We have to wait a while for the new collar, in the meantime Lucy has to do her exercises five times a day and wear the collar day and night. She hates the collar but doesn't complain because it hurts when she takes it off. Even if we take it off for a bath and she is without it for around 20 minutes in total (yes, it has to be a quick bath/shower) she is in loads of pain and her neck is dropping back down again. So basically the collar is supporting her and easing the pain, but it's not actually fixing her neck.

She's not on the diazepam anymore, just paracetamol and codeine when the pain gets bad. She's not sleeping well again, but at least she can still eat.

We are off to Blackpool in a couple of days but first we have a visit to the hospital for physio and to see if they have her new collar yet.

Wednesday, 14 August 2013

Lucys neck part three

It's now 13 days since Lucy got the pain in her neck and 9 days since we first took her to hospital (We took her to the GP the day before, 10 days ago)

Yesterday we didn't get the scan results, despite my calling the hospital and them promising to call back. What I did get was an appointment for first thing this morning to talk about the results and what was going to happen next. i.e possibly some TREATMENT

So we got to the hospital and were seen in just 15 minutes. Then told to wait for the neurosurgeon. What Lucy has is effectively a dislocation in her neck. She's been walking around for 13 days with it.

We waited for the neurosurgeon, and then waited some more. They got sorry for us waiting in the corrider (After 2 hours) so took us to a more comfortable room and put a dvd on for Lucy. They also brought her some lunch (Which she didn't eat) and me a cup of tea.

Finally we got the see the neurosurgeon who said they were going to admit Lucy and put a collar on her.
An hour or so later and we were on the ward.

So she's now in a collar and on regular doses of Diazepam to relax her muscles, and hopefully this is all she
will need to get better. There has been talk of manipulation under aneasthetic, but only as a last resort.

I feel so bad for her and all she has suffered. I am certain she could have been helped sooner.

Monday, 12 August 2013

Lucy's neck part two.

It's now been 11 days since Lucy started complaining about her neck, however, after checking my diary I can see she also complained a couple of days sooner but it appeared to be ok the next day, so that's 13 days since it started.
Today we went to the hospital for a CT scan on her neck. We were left waiting two hours as they had a couple of emergency cases brought in.
Lucy was really unwell today, the worst I've seen her so far, she was also feeling sick. She slept for an hour while we were waiting.
During the scan she was really brave and didn't move an inch even though it hurts her to lie flat on her back.

After the scan we went to A&E as we had been told to wait for the results of the scan. We waited 2 hours and then were called into a cubicle where we waited a further 20 minutes until the Dr arrived. She hadn't got a clue what was going on. The results had not been sent through because they had not been marked as urgent. It was impossible to get them now until morning (it was now 7.30pm) So we'd waited all that time for nothing.

The Dr asked what we'd been told and when we said Torticollis she said, 'oh, you do know that that can take at least a week to get better?' 'Yes, I said, it's been 11 days now and she's getting worse not better'
I told her I'd run out of Diazepam and she said she'd get us some more. She went away and came back 10 minutes later to tell us she couldn't get the Diazepam and gave us a prescription. The pharmacy was closed so we couldn't get it until morning anyway. She told us that they'd ring us in the morning with the results from the scan and that she'd made an appointment for Lucy on Thursday.
So we still have no answers and now we have to see our little girl suffer for 3 more days before seeing another Dr. I told her I wasn't happy.
She then told us to ring tomorrow around lunch time for the results of the scan....uh, didnt' she just tell us they'd ring us in the morning?
Then on the way out she told us to go to reception and make an appointment for Thursday. She had previously told us that she'd made an appointment.
At the last minute, like it was an after thought, she said, 'don't worry if it was anything serious the sonographer would have told us, I'm sure he would have looked over the scan results'
Did I believe her? Did I hell!
I told her, it might not be anything serious, but my 7 yr old little girl is in agony and has been for 11 days and no-one seems to be doing anything about it. It's ok taking her for scans, but what's the point if you're not actually doing anything to help ease her pain?
I was told they would talk it through with me on Thursday.
I'm not waiting until Thursday.When they call, or I call tomorrow (who knows) I'm going to tell them whatever the results I'm bringing her back in for TREATMENT....maybe someone there has heard of the word??
I really don't want to see my little girl suffer anymore.

Friday, 9 August 2013

Lucy's Neck

Just over a week ago Lucy woke up with a painful neck. I gave her painkillers and it seemed to get better, but she looked different, kind of mis-aligned.
The next day she wasn't too bad but by bedtime was complaining that her neck was hurting again. She was still unwell the next day which was a Sunday so on Monday morning I took her to see the Dr. He said she may have an infection but she couldn't open her mouth far enough for him to see. He gave us anti-biotics and told us to keep giving her painkillers.
The next day we had a day out planned. I thought that it would take her mind off it and she was looking a bit better. As the day wore on I could see her getting into more and more pain. She was trying to join in with the other children, she wanted to have fun but the pain was becoming unbearable. So we took her to A&E. They told us they thought she had Torticollis or wry neck and because of her hypermobility it was taking it's time to heal. They gave us some Diazapam, a muscle relaxant and told us to keep up the painkillers. The next day she seemed much better and I thought she'd turned a corner. As the day wore on her neck became painful again but her next dose of Diazapam made her sleepy.
We had an appointment at the hospital for a review the next day, but Lucy was worse again. She was in a lot of pain and the consultant was really concerned. Also worrying was that she had come out in a blood rash around her throat. Of course the worry then was that it was meningitis so she was given a CT scan. Thankfully her brain was clear but they couldn't do her neck at the same time and told us to go back the next day for an MRI scan.
The next morning the hospital had decided that Lucy wouldn't be able to cope with an MRI scan so booked her in for a neck CT scan on Monday.
Today, Lucy has been in a lot of pain despite the Diazapam and painkillers. She's not eating and can barely move her jaw. We are worried sick about her. Surely she should be showing some improvement by now. We have been hopeful so far because she hasn't had a temperature or been sick, but now she's complaining of headache too.

I hope and pray that she makes a recovery soon. I'm scared of what the hospital may find on Monday, but I'm staying positive that it will be something easily remedied once they know what to do. I hate seeing her suffer, but she's not complaining loudly, just constantly wincing. If you ask if she's ok she'll say yes, but you only have to look at her to see how much pain she is in. My poor little girl.