Posted by Lynndi Hello everyone, Thank you all so much for your good wishes The eve of Alices op I was very emotional I have to say. She remained happy and chatty. We lay on her bed together watching TV, I was desperately trying to control my emotions, I was doing quite well until, she turned to look at me, put her little hands on either side of my face, gave me a kiss, looked me in the eyes and said, I love you mummy Well as you can guess! That totally finished me off! I said, Im just going to the loo, and was gone for about 20 minutes until I could regain my composure. This night was the first time in 5 years that she had not worn her brace. As I walked into the corridor, the emotions I had been suppressing, completely and so unexpectedly, exploded from inside of me. I couldnt breathe. The nurse put her arm around me. We stood together just holding each other I was crying, she was crying too From here she was moved back on to the ward in a bay opposite the nurses station so as they could keep more regular observations on her. The boy in the bed opposite Alice had had a lumbar spinal fusion and he was having problems with them giving him the proper care in the evening! Alice began to look very poorly, which did worry me a little When Alices post operative brace arrived, she was allowed to sit for the first time. The brace takes 10 days to arrive from America, so until this time she was only allowed to lie at an angle of no more than 30 degrees. She found the brace unbearable, mainly because of the position of the anterior scar. I also knew that I would get the full support from my doctors at home, and knew that they would agree with me over the pain relief issue. On the morning we were due to leave I asked this nursing sister for a prescription for what Alice was taking. She said, She wont be able to have a prescription as it takes at least for hours to come up from down stairs. (She knew 24 hours in advance that we were going home!) Strangely it was a very odd feeling actually leaving the hospital having been there for almost three weeks. I think it was a mixture of relief, and I want to go home, and, Am I really doing the right thing. The latter soon went out of my mind! He was horrified to hear what they were expecting her to go through without any kind of pain relief. He said , it would be like an adult going through a major car accident, receiving several broken bones and expecting them to only take paracetamol What is happening today (Thursday 20th November 2003) She remains cheerful, and positive. And although it really hurts for her to wear her brace she really is trying very hard. The disappointing news
on 11/20/2003, 8:05 am
81.132.54.53
WE ARE HOME
Alice still remained chatty and happy! After all the preparing we had done for this day, if I could have picked her up and run away, I would have.
She lay on the trolley holding my hand,as they gave her the magic sleep medicine, she turned to look at me, and for the first time, her bottom lip quivered, I dont like it mummy, she said as she went off to sleep.
The next part of the day went surprisingly quickly. Alices was in theatre for 9 hours, and they were very happy with the way the operation had gone. What they had said that they were going to do; on the day, they did something completely different.
The plan was to fuse the top and base of her spine. Instead they fused the middle.
The incisions are extremely neat and the posterior one is not to big at all both are very neatly done. Neither was closed with staples or a long running suture. They were closed with dissolving sutures and steri-strips. They have remained clean and dry the whole time.
Alice was in Intensive care overnight, and just one day. She was moved to the High Dependency Unit for four days. She remained her positive, happy little self even though, she was hurting a lot.
During these days she was x-rayed in the unit everyday to check that her lung was inflating properly. After 3 days one chest drain came out and then the other the following day.
Alice didnt even wince when they took her drains, catheter, and canulas out. In fact when her chest drains came out she asked to see them. This was such a relief for her as the positions of the drains were very uncomfortable. She lost very little blood during the operation, and they replaced only a couple of units.
They wanted to get her off the Morphine when we were back on the ward, but her pain was constant and she was in so much as they were trying to change the medication I found this bit unbearable. One night she was so upset, she was twisting her body in pain. Something she was not supposed to be doing!!!!!!!!!. I asked for her pain relief, (diazepam), which the pain nurse had prescribed for the spasms she was getting, but the nurse refused. I said she needs some pain relief and after half an hour of us both being very upset, she brought her some diclofenic. The thing that hurt me most was I had promised Alice that the nurses would, look after her and not let her hurt too much. I had let her down!
The next morning I complained to the doctor and the pain nurse. This nurse was on nearly every night, but she avoided speaking to me or even looking at me. I wonder why?! The day staff were brilliant. They actually made sure Alice received her pain relief before the change of shift.
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But after two weeks of lying on her back, she was allowed to sit up. The following day they had her standing and taking her first steps.
They said I would be allowed to bring her home if she showed them she could stand, and take a few steps.
I had told them, of my experience, in caring for people, and that I felt more than capable of coping with her at home.
The nursing sister that was on, the last week we were there was another who thought that children should leave hospital with no more than paracetamol.
These children that she is talking about have all had posterior fusions, and are all over 12 years old!
My argument with them was that, if they want Alice to be up and moving. To wear a brace over her incision wound and where they had taken a rib out. And where this brace applies a lot of pressure. Then she had to have some relief from the pain.
In the end I decided the sooner I get her home the better! !
Just before we left I was talking to the charge nurse. He said, Have you got everything you need for going home. When I said, all apart from her medication, he asked why not? When I told him, he said he would have done me a prescription!
I had phoned our doctors surgery before we left the hospital to arrange for a prescription for her. The triage nurse was going to get the doctor to call me in the afternoon.
He sorted me out a prescription for all her medicines, dressings etc. and wrote me a plan to give her the best coverage possible. He has asked our district nurse to call. And offered me any help at any time.
Alice is now tolerating her brace for very short lengths of time. She is walking quite well with help, and is trying to go from lying to sitting on her own. We have got a wheel chair for her so once she can sit better and for longer, we will be able to take her out.
We are accommodating her downstairs, so as we dont have to carry her upstairs and do our own backs in!
She is also much more comfortable The physio came this morning and is very pleased with what she is doing. I am making my own schedules for her. I know her best, but I also know when I can push her that little bit further. I have her resting in her brace as well as doing her exercises in it. I have asked for a tens machine to try to see if that will help. I am positive that once she can wear her brace she will come on very quickly.
When we were in hospital, Alices consultant was looking at her x-rays across the ward from us. They were x-rays that were taken after he had done the operation in Intensive Care. He was there for a long time looking and measuring with his fingers the different parts of the spine that showed on the x-ray. Call it intuition I dont know. He turned and came towards us. Sat down on the edge of the bed and asked how Alice was doing. He went a little quiet looked at her then back to me and said, I am very sorry, but I have to tell you that the instrumentation that we put in isnt holding the curve, and one of the screws is already pulling out. We are going to have to operate again in a few months time and put some longer instrumentation in.
Watch This space
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