Thursday May 18th.
A day that for me started badly but then got better.
I was unable to get through to Val on her mobile and when I rang the ward the ward clerk made it sound as if there was an issue with Val – “nurse and doctor are with her and she is very quiet. No I can’t tell you anymore. You will need to ring back and speak to the nurse.”
My concern button had been well and truly pushed particularly as I had not slept particularly well and just the build up of emotion over the last weeks. When my phone rang and I could hear Val’s voice the dam broke and I sobbed my heart out for a few minutes.
Val had slept well and said that she felt a little better so the nutrition was working.
When I saw Val she looked so much better than yesterday. Her stomach drain and catheter had been restored. It appeared that there was fluid in her stomach that was causing some infection – pity they didn’t do the scan they had said was necessary last Friday. We were able to chat about a range of things including the eagerly awaited eighth grandchild and play some cards.
The surgeon came to see us and told us that Val had a slight chest infection that he was going to deal with through more physiotherapy. Otherwise everything was working and it was now a case of building her up – pity they didn’t start the external feeding sooner. So I left far happier than I had the night before.
Friday May 19th.
Family and friends were adamant that I needed a break from the daily round of hospital visits etc. Some friends and I had arranged early in the New Year to visit the Times and Sunday Times wine tasting event at Old Billingsgate Fish Market in London and I was disappointed at the prospect of missing it. James said that he would come up and cover visiting Val and a friend, Katherine, said that she would do it if for some reason James was unable.
It seemed really strange to think that I would not see Val and even the words “taking a break” seemed wrong in the context of Val’s situation but the last two weeks had been particularly gruelling so even I reluctantly accepted that a day off was not a luxury but a necessity. We could and did keep in touch via texts and phone calls. It would be the first day since April 19th when I had not seen the inside of a hospital.
Val phoned me early and she sounded so much better already. The nutrition was clearly working and made me wonder what the situation would have been if the external feeding had been started a week earlier.
I did enjoy my day and after a damp start the weather improved and when we left the wine tasting we walked along the river walk on the north bank of the Thames and turned up towards the Strand when we reached the rear of the Savoy, and then enjoyed watching the buskers and the people around Covent Garden.
At one point I phoned James and he said that Val was quite bright, they had played cards and that Val had been keen to get out of bed and have a walk using the zimmer frame that had now been provided but the nurses persuaded her otherwise.
Unfortunately Val’s eyes were once again blurred and when she had told me in our early morning phone call I had told her to make sure that she told the doctors when they came round although it was almost certainly the antibiotics that she was once again on that was the cause.
James had also brought up some meals that Jane had made for me and they were in the freezer when I got home.
It had been a good day. I hope that where Val is concerned that this won’t turn into another false dawn.
Saturday May 20th.
Lorna and Helen were visiting today and it was really good to see them and Val enjoyed hearing their news particularly about the grandchildren.
Val had telephoned me mid-morning to say that they were going to stop the IV feeding and insert a gastro-tube and feed her that way to see if the stomach could cope. I am not sure on what basis this has been decided.
When we got to see Val her nurse came to update us and gave us the worrying news that Val had lost 7kg in weight since Thursday. It is difficult to process this information other than to say that the nurse seemed worried.
Otherwise Val was sleepy but not too bad in herself.
I spoke to James later and we were both concerned about the basis on which the decision had been made to change the method of feeding. I believed that the hospital team had made a number of poor calls where Val’s treatment was concerned namely:
Consequently, I agreed to:
Firstly, I spoke to the sister who agreed to write up my concerns in Val’s notes, and she agreed with what I was saying. Secondly, I sent the following email to the gastro-neurologist in London:
“I have just visited Val and been told that since Thursday 18 May, she has lost 7kg in weight and is now down to 45kg.
Val has been fed intravenously since Wednesday afternoon but her medical team are now intending to stop this and feed her through a nasal tube to see if her gut is working. If it isn't then Val risks further vomiting, weight loss and her recovery will be affected. I and the family are concerned about this and for example wonder whether she should be taking prucalopride or erythromycin for a couple of days beforehand in preparation for this change and indeed whether this change is being made too soon.
As a family we are anxious and would value your opinion on this development.”
Sunday May 21st.
Perhaps unsurprisingly, the London doctor was non-committal in his response saying only that he was happy to work with the hospital team to arrive at a solution. In the event the decision was to maintain the IV feeding whilst removing the nasal tube and reintroducing food. Apparently the doctors doing the ward round commented that they had seen the note that the sister had made of my concerns the day before.
Val had slept well and sounded bright and looking forward to seeing her visitors. My brother and his wife, Barry and Michelle, had driven up from London and we had lunch on the way to the hospital. It was good to see them and to catch up with all the news.
When we arrived at the hospital the sister told us that in fact Val’s weight was 54kg and that the 45kg of the day before was a rogue reading caused by not having Val correctly positioned on the scales.
Val was feeling better for having the nasal tube removed and said that her throat was feeling better. The antibiotics seemed to have affected her eyes again which is a shame – so it could well have been the antibiotics that were the culprits four weeks ago.
I took Barry off for a cup of tea and a chat while Michelle stayed with Val. My niece Becky gets married in three weeks and it’s yet another of this year’s events that we have had to pull out of.
Shortly after Barry and Michelle left, our friend Katherine arrived to see Val and so I left and made my way home but not before being given instructions for some food and drink items to bring in tomorrow.
Monday May 22nd.
Val had been moved the previous evening from her six-bedded bay into a side room because once again she was to be the only female patient on the ward. This side room came with its own ensuite toilet.
Our early morning phone call was positive as she had slept well and it was clear that she wanted to eat but just not hospital food. My challenge was to visit her complete with:
I also had taken an idea from a leaflet that the dietician had given us and had made some small pots of apple fool (Recipe: custard, double cream and apple sauce) and that seemed to go down well.
While I was there the physio came and got Val up and walking while I followed on with her drip stand. The effort made her tired but she had been sitting out in her chair most of the morning.
Val seemed in good spirits and she seemed back, almost, to her old self and desperately wants to come home. She says that each day is much the same and she is bored but she is no longer down as she had been a week before.
The dietician came to see Val and said that the plan was to halve the rate of the IV feeding and get her to eat more herself. Coincidentally I had had a phone call from the dietetics department at Hospital A and Val will be visited at home by a dietician which will be helpful.
Hopefully this will prove to be a corner turned.
Tuesday May 23rd.
Val had had another good night and gave me my instructions as to the food she wanted me to take in.
She was very fed-up when I saw her and really wants to come home. An example of why she wants to come home: the site of a cannula in her right arm looked sore and was no longer being used and so I asked whether it could be removed. It was duly removed and then within about half an hour a doctor appeared to insert another cannula so that IV fluids could be administered to correct the potassium and magnesium levels in her blood. The irony of this is that it has been caused by Val’s levels of nutrition and this was done just as I had poured her a mug of cream of chicken soup which she had to put to one side until the doctor had finished.
Val can’t see any light at the end of the tunnel. I spoke to her nurse as she left and told her of my concerns. She suggested that I took Val out of the ward in a wheelchair and I explained that I had done that on consecutive days a week or so ago when she had been free of drips, which was no longer the case. Another suggestion was that perhaps I could bring her home for a day or half a day but I would not entertain that having experienced that with my father. It was one of the hardest, I would go so far as to say cruellest, days as dad really did not want to return to his hospital bed. I am not sure in the face of Val’s protests that I would be able to do that to her.
I also rang the ward sister and passed on my concerns and asked to see one of Val’s doctors tomorrow.
Later in the evening Jason rang and he and I don’t seem to be on the same page where Val is concerned which I find hard to stomach given his decision to take a holiday to Cape Verde (six hour flight from Manchester and poor wi-fi connection) at a time when Val was not at all well. By the time he visits tomorrow it will have been two weeks, two hellish weeks by the way, since he had visited her. For reasons that I won’t go into here it was a poor, impetuous and thoroughly selfish decision on his part to take that holiday at that time.
Wednesday May 24th.
Val had slept well, was eating more, her stoma was working and she had put on more weight and was now only 1kg less than she was at her pre-op assessment. So, lots of upsides but with the downsides of tiredness and weakness.
It seems that we are reaching a tipping point given that Val naturally wants to come home. There seems to be universal agreement that her recovery will proceed better at home – her doctors, nurses, friends who are retired nurses and indeed Val and I are in that camp. In the opposite camp are James and Jason who feel that Val would be better of spending longer in hospital and only coming out when she ticks all the discharge boxes, although it is a moot point as to how much for example physio Val will get over the coming bank holiday.
What are the upsides of Val coming home:
The downsides centre on issues where I don’t have the technical knowledge:
So we know the issues and tomorrow we will need to find out the answers.
