Coming Back For Air
As you can imagine, by now I was thoroughly dispirited and could only feel that my only hope of seeing home would be for a few hours as the registrar had said she could not see it was possible for me to recover from this to be well enough. I really had also lost my fighting will and felt that every tie I talked to hubby, he was just not taking the situation seriousness. He’d tell me I’d been there before and had got back again. “Yes“, I’d say “but not from an oxygen saturation of 60%, needing 15 litres per minute of oxygen or having a blood pressure of 80/40 and having blood protein levels that were too low to hold my cells together”. He felt I was too negative but said he’d explained to the children how serious this time in hospital was.
Friday 6th - I was actually beginning to make progress. I’d got my oxygen requirements down to 10 litres and I could get from the bed to the chair but no further. I could also last a few minutes off oxygen to eat independently and I didn’t feel I was drowning anymore. The water tablets were working during the day but in the morning I could see that my ankles and arm were swelling and that my wedding ring wasn’t as loose so I wasn’t there yet. I was trying to be more positive but all I could feel was that I’d had all this time to get things done and they weren’t and this made me a failure.
At least, I was now getting help with a wash even if the student’s nurse’s understanding of the function of lungs and approach to parents wasn’t entirely up to what I thought a second year student nurse should be.
The student nurse was cross with me for having a cluttered bedside table but I explained what choice did I have? I had to have bottled water as half the time the water tasted disgusting or we didn’t have any and it wasn’t my fault that the builders who had rebuilt the ward had put the reset nurse call button just above the top of locker height so that you could not use the top at all. NO, I COULD NOT BE OFF OXYGEN FOR 5 MINUTES WHILE YOU FIDDLE FADDLE ABOUT TRYING TO CHANGE THE OXYGEN CONNECTOR FROM MASK TO NEBULISER. What do they teach these student nurses? Not communication skills, not body language and now not anatomy and physiology - what do they spend their 3 years doing?
All over the weekend, I was so pleased for the help and support I got from my family and friends as I would never have got better without them. I was also grateful to everyone who either helped or volunteered to help with the children as that made such a difference to us and especially to hubby who was laid low with the same chest infection.
Sunday was sad as I had to say goodbye to my sister and mum who needed to get back to their homes. My sister had been with me since Thursday and my mum since Wednesday and I would miss their help and company.
The weather was also in the same sad and angry mood as me.
I’ve said before that the quality of the rebuild of the ward was poor and the weather was definitely a test which it failed abysmally. The poor girl who got admitted to that bed was very scared anyway but then had the added misery of a new double glazed window which had not been fitted properly and so not only had the added noise of the wind screeching through a gap but also got wet as the rain came in. Unbelievable in this day and age that a builder could be so incapable of fitting a window, fitting door locks and making a wet room with the floor sloping the wrong way and I’ve just realised I have forgotten to tell you about the fuses. If I knew the name of the builders I’d name and shame them but I don’t, so all I can do is call whoever is responsible for accepting a new build in that condition, a complete pillock - there are many unsuitable words that spring to mind but as I don’t know who will read this, I will keep the language polite.
When I arrived on the ward, the light didn’t work and by Monday morning the nurse call button had also given up. The lady next to me said it had been like that when she was there last week so on Monday 2 maintenance men turned up. This will now sound like “right” said Fred, “get another ladder out” (- not the “I’m too sexy for” version.) The 2 men looked at the light and the nurse call button controller and declared that it was a fuse and 2 electricians were needed. You pay peanuts…………….. The 2 electricians came and took the first panel off and one of the men was immediately hit by the underneath panel which had not been fixed in properly!!!!! Somehow, this then prompted the new fuse to fuse the rest of the bay’s nurse call buttons, overhead lights and the emergency call button. This was obviously not the first time it had happened as we all got issued with remote door bells. What makes that statement work is that I had the number 7 on mine so it was obviously expected to happen in more than one bay as well as the bay had 6 beds in!
This now meant a senior electrician who was trusted enough to come on his own arrived and changed a main fuse and hey presto, light and sound was returned to Bay 2.
Monday - I was definitely feeling better and the morning swelling was less. Hubby arrived and this time he actually managed to see the doctor. This doctor was very confident but had a lovely manner so the communication skills taught in medical school are working there then. I thought he was a registrar but in fact was a F2 (SHO - means that he left medical school 2 years ago) but he seemed to know what he was talking about and importantly, was not afraid to tell us when he didn’t know something, which is a quality you never used to see or hear so we admired his honesty. He explained that I’d been very ill and had made a remarkable recovery quickly but the future was looking better. Hubby asked how I could have been walking around London last week and been quite well and then 5 days later on tuesday be near enough dead and even in a few hours deteriorate so rapidly. He explained that in older people, their bodies shut down slowly so you see a deterioration over a longer period of time - a sort of slope on a graph but in young people (relief to know I’m still young at 46 as I was beginning to wonder as most charities don’t consider me young anymore), their bodies fight and fight until it meets a resistance like an infection and then just crashes so the graph looks like a vertical drop. He said that is what they thought had happened to me that my protein levels had kept up until an infection had caused them to lose their level and the cell walls had collapsed allowing the leaking of the fluid into my lungs. As this water was in my alveoli at the far end of the lungs, they couldn’t put a drain in to get the water off. All they could do is to use water tablets and steroids to reduce the inflammation and this is what they had tried and it had worked. Now was a time to see if I could tolerate less oxygen and become stronger so that I could get up the stairs and manage at home. It was good to hear the same story from the doctor and be together hearing the news as so frequently due to commitments, hubby rarely was able to attend appointments with me and at the hospital it was almost impossible to see a doctor when he was actually there. Things seemed brighter.
It especially seemed brighter when I saw the palliative care doctor who felt that I had not crossed that critical protein level and that my protein levels were acceptable and weren’t being artificially boosted by dehydration which is what I’d been told by the specialist registrar. She also wanted to get me well enough to get home and was sure the hospice could rehabilitate me to that level. I was also anxious to get off the morphine pump as it seemed to be giving me less pain relief and not more and I was taking more of the oromorph. She also suggested that I took lorazepam to help my breathing at times when I was struggling as it would not only calm me down but opens up the airways as well. That made me feel better as previously I’d felt I’d only use the lorazepam to calm me down and not realised that it had a physical effect on my lungs as well.
I was now down to 5 litres and could walk around my bed.
Tuesday 11th November - I saw my consultant and my hubby arrived at about the same time too so that was good. My consultant seemed very pleased to see me and gave me a little pat on the arm. He was pleased that my chest sounded so much better and that my oxygen requirements were less and that he could see that I was well enough to reach Christmas. He was confident that I could be rehabilitated to a level where I could cope at home and even could see that chemo was a possibility. He left with a little wave and we both felt so relieved. Now, I needed a hospice bed. 10 minutes later, I was told there was now a hospice bed - whoopee!!!