In my last post I told you about the fun Christmas we had, in this post I will tell you about the last 7 weeks which I can only describe as traumatic.
January the 16th came around, this was the day Paige was due to go into hospital for surgery the next day, we had spoken with her. Her mum had tried to explain in a basic way what would be happening and why she had to go for surgery the ambulance was late picking her up which got us all uptight, she screamed as she was wheeled into the ambulance, I could not travel with them as they said there would be no room. My heart was breaking seeing her like that, I drove down to Southampton and arrived at the hospital and made my way up to the ward, when I got onto the ward the sister told me they were not expecting her till much later in the day, yet we had a letter telling us she had to be in by 12.00, so again not a brilliant start.
Paige arrived and looked settled her mum said she had relaxed in the ambulance, the nurse showed us her bed and she was transferred into it, then it was the usual round of form filling and questions, putting id tags on Paige another thing she hates, then the blood tests as you can imagine by now she was screaming again and begging to go home.
Joanne my daughter was staying with Paige overnight while she stayed in hospital and I would step in to do a night or two depending on how long she would be in. Joanne did not get any sleep that night, neither did Paige it was very noisy. Next morning Graham, who is Paige’s step father and myself got there very early, so we could support Joanne as Paige went to theatre. The waiting is the worst part, just sitting praying she is ok, it was awful as she screamed and thrashed all the way down to theatre, my heart was again in pieces for both Paige and Joanne.
Paige arrived back on the ward after several hours and we were told the operation had gone very well and the surgeon was pleased. She had been moved to high dependency nursing and moved onto an airflow mattress, she looked so pale and weak, she had an epidural in her back to help control the pain. We were told the epidural would stay in for about 48 hours, as she came too she was quite comfortable the epidural was doing it’s job. Jo, Graham and myself felt a great sense of relief that she had come through it and was back with us.
Next day I battled deep snow and it took me 4 hours to get to the hospital but I got there, they had put Paige on a catheter as they found she was not passing water, this sometimes happens when an epidural is in place, other than that things seemed ok, poor Jo could not get any sleep as this ward was so noisy with crying children at all hours of the night.
Next day the Saturday when I arrived it was to find Paige screaming in pain, I had never seen anything like it her whole body was shaking, Joanne was looking terrified, she explained they had come and turned off the epidural and no one had been to give her any pain relief, they could not seem to get anyone from the pain team. They gave her paracetamol a child’s does, it had no effect at all. I really could not believe this was happening, I was furious, finally Jo managed to get the sister to get a a pain relief suppository that only just took the edge of things.
From that day it was just a spiral of mistakes and bad communication, she was at one time left 6 hours without pain relief as the nurses did not look at her medication chart, they missed the fact that her catheter was bypassing that was something I had to point out to them. The most disappointing thing was the total lack of compassion on this ward, no one really cared, we had one good nurse called Sarah she was a real nurse the rest should not be nursing. During the next couple of days physiotherapists came and decided they would get Paige sat bolt upright, she had not done this for over a year due to pain yet they thought she should be able too, there actions nearly caused Paige to have a seizure. My poor daughter was being put through hell, she knew by gut instinct and common sense what they were doing was wrong. They had not even got her pain under control yet these physiotherapists thought they could work with her, when the pain team finally got things a little under control they stated that Joanne had grounds for complaint as they medication chart showed long gaps where medication should have been given. Paige was by now very frightened and begging to come home. We had decided the best place for her was now home as we knew we could give her better nursing and she would feel happy and safe. This blog does not list all the shocking events that took place as Joanne is putting together a formal complaint to try and save other children having to go through what she did. On the day of her discharge the ambulance came to collect Paige just as she was due pain relief, Jo went to see the sister about giving her the medication and the response was, oh they are all packed up you will have to give her them in the ambulance, I could not get my head around that attitude.
I have never seen a person so happy to be back in there own bedroom as she was, she felt safe, and although still in pain the fear was not the same. Joanne had been sent home from the hospital with three bags of medication, no charts to keep a check of what was been given, so between us we set to and started our own charts, which monitored everything, medication, temperature,daily notes and fluid and food intake.
Paige is slowly improving we have a long road ahead of us, she still has pain we are doing physiotherapy daily with her, we had to get in-touch with the surgeon as we had been told that by week three she should not need pain relief the surgeon wrote back saying we had been given unrealistic expectations and she would have pain for at least 6 weeks and that is why the recovery is going to take between 3 to 6 months. I cannot help but wonder if the pain team and the nursing staff even understood the type of surgery that Paige underwent. We did however see other children in there screaming in pain which makes me ask the question, what is wrong on that ward? this really should not be happening, it does not happen on adult wards.
My daughter would not consider letting Paige go back to Southampton hospital now for any type of treatment, thankfully we have had excellent support from the two lady GP’s who look after Paige at home but we still do feel very much as though we are in this on our own, god help us if I did not have my nursing experience, I can imagine how frightened some parents must feel.
I really hope that in another 6 weeks I will sit here and write that she is fully on the road to recovery till then we live day by day loving and caring for her.
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