Thursday May 4th.
At long last, after another disturbed night, Val’s stoma has started to work. She is still not eating and drinking particularly well but it is a start. The physios had got her out of bed and moving so by the time I visited her she was back in bed and although looking well, she was tired.
Val told me that the agency nurse (paid twice as much as her NHS colleagues – hello?) had caused a lot of disruption to her during the night – putting a line into a redundant cannula causing leakage, moving the drip stand from its “normal” position on Val’s right to the other side of the bed which took a long time because the nurse had mobility issues due to her girth, and calling a doctor to put a cannula in only to find when he arrived that there was already a cannula in place that she could use.
Fortunately I was there when Val’s surgeon came to see her. He remains pleased with her and said she is virtually ready to come home once they have sorted out her stomach and its food intake. He described her new catheter, having seen the scan as “beautiful”. Opposite the nursing station there is a screen showing the patients on the ward and it gives Val’s Estimated Discharge Date as Monday May 8th. I think the key word there is “estimated”.
Friday May 5th.
Val had endured another bad night – nausea, pain and the alarm on her IV machine going off all night. This last problem was caused by the siting of a cannula which meant the slightest movement of her arm set the alarm off.
Other than that she sounded quite bright when I spoke to her in our by now regular morning phone call. During the morning I ordered some washable bed protectors and rang the District Nurses to ask what else I should order for when Val does come home. The District Nurse I spoke to suggested that I bought some pads but said that they would carry out an incontinence assessment when Val was home. It was also suggested that I asked the ward to ring them if there was any special equipment that she might need. So, when I went to visit Val I mentioned this to Val’s nurse who seemed somewhat surprised by the District Nurse’s suggestion but made a note of the relevant telephone number. Val had also been seen by the Occupational Therapist who would arrange for the loan of a perching stool for Val when she comes home.
The alarm on the IV machine was still going off and eventually a very pleasant young doctor came to put in a new cannula which he did after a number of attempts as finding a suitable site on Val’s arms was difficult given how many other cannulas she had had over the last two weeks. Unfortunately when he had finished it was still the case that the alarm kept going off.
A little while later the doctor came and raised the issue of Val having a nasal gastro tube inserted to help drain the “bile” that she was bringing up when she was sick. Val was initially resistant to this – I think for two reasons namely (1) they are unpleasant to insert and (2) she felt it would further delay her discharge. Later when another wave of nausea hit her she changed her mind and I got the doctor to come back and speak to her. By this time he had consulted some senior colleagues and it was decided to arrange a stomach x-ray to determine if there was a blockage or distention to her stomach. They would then decide about the nasal tube.
In the meantime, Val had emailed the gastro-neurologist who she had seen at the London hospital to explain her predicament and to ask for his help. He replied that he was away but would be back on Tuesday and suggested that the doctors treating her contact him and he would help come up with a treatment plan.
The x-ray was carried out at 21.30.
Saturday May 6th.
Val didn’t sound too bad when we spoke first thing and told me that she had slept for ten hours, and talked about how much she was looking forward to having a shower that morning.
As soon as I walked into her room at 3.00, I could see that she wasn’t right. I think it was her eyes as much as anything together with the way she was sitting. She was waiting for another cannula to be inserted as the old one had stopped working, and a young doctor came soon after I arrived to put it into a vein in her right wrist.
Val is worried about the lack of activity where her stoma is concerned. The x-ray had not revealed any blockage and the doctors who examined her said that they could hear noises in her stomach. We talked about this and I reminded Val that over the years she had experienced this issue with her stoma on many occasions and it had always sorted itself out naturally or with the help of medicine. The surgeon had spoken to Val of the trauma to her body caused by the operation, likening it to a car crash, and so even the parts of her body that were not directly affected by the operation would have suffered some “collateral damage”.
We also speculated that really since the middle of February she had been taking morphine but she had decided the day before to try to stop taking it for pain relief as it does have the side effect of causing constipation. Where pain relief was concerned, Val was now having paracetamol intravenously.
When a nurse came to carry out Val’s observations, I mentioned the fact that Val was feeling unwell and she thought the effort of having a shower would have made her feel tired and drained of energy.
Val is making progress in the sense that she is travelling around a long bend rather than turning a corner and she has come a long way since the first time I had seen her in ITU. With everything else going well the one thing holding back her recovery, and therefore her coming home, is her starting to eat and drink without feeling nauseous or vomiting. When we spoke later in the evening Val said her stoma was definitely working and so it will be interesting to see what tomorrow will bring.
Sunday May 7th.
My day started well as Val rang me to say that she was feeling much better, had slept reasonably well and the best news of all was that her stomach and therefore her stoma was working. The doctors had said that she could start eating again – soft foods – and drinking.
When I visited at 3.00 she looked so much better and quickly ate the crème caramel that I had taken in and most definitely wanted a “nice” coffee. I had told her about a machine along the corridor and so fetched a cappuccino for her and a latte for me. Val thought hers was delicious and was happily drinking it when a nurse came round with the trolley dispensing hot drinks. The nurse took one look at Val and said “I don’t blame you” and moved on. When I went to fetch the coffees I noticed that the board opposite the nursing station was still showing her Estimated Discharge Date as May 8th but now had minus 1 after it meaning May 9th at the earliest.
Not long afterwards a physio came and took Val for a walk up the ward and she managed well given that she was accompanied by a drip stand and catheters.
Val is concerned about her coming home incontinent and therefore being “a smelly old woman” and we talked about it. I think things are going to turn out alright so on what am I basing this optimism? Firstly, the skill of the surgeon who we have total faith in. Secondly, Val’s own character, strong minded and determined, will ensure that she learns to manage her new bladder. I think that until the catheter is removed Val won’t be able to start learning about her new bladder not forgetting that her stomach muscles that she will need to use have to heal as well. We also discussed some aids that I could get in ready for her return home. Once again it is a case of not over-thinking things and concentrating on small steps.
A positive day although I am mindful that last Sunday had been another good day that had not lasted the subsequent evening and night. If this is the green shoots of recovery then it may not be necessary to contact her consultant in London. - fingers crossed!
Monday May 8th.
Val had had another restless night, ironically caused by her stoma going into overdrive.
The first person to visit Val was her friend Corinne who is a nurse. I then arrived at 3.45 just as Corinne was leaving and I could see at once that Val did not look right although perhaps less so than the day before. Her stoma was still in overdrive and she asked me to help her to the toilet so that she could empty her bag.
There were three toilets just a few paces from her room and I was surprised when Val headed for the nearest one which was a male toilet. I stopped her and said the ladies toilet was the one on the end. Val replied that she knew but had been using the male toilet and had been having her showers in there. I was concerned as I know that men aren’t necessarily the most hygienic individuals however Val did go into the ladies and I stood guard outside.
Safely back in her room Val tackled one of the crème caramels I had taken in and I went to get us a latte each. Unfortunately, the days of vomiting had resulted in the bile and stomach acid burning her throat and this made swallowing, particularly cold food, somewhat difficult.
Jason arrived at about 4.30, on his way to work, but I could see that Val was struggling to engage and looked in need of a nap if not a sleep. Jason left at about 5.30 and I followed at 5.45 and I noticed that on the screen opposite the nursing station her Estimated Discharge Date was now showing minus 2. Later when I rang Val she was lying on her bed reading.
It seems that the improvement doesn’t seem to last.
Tuesday May 9th.
Val rang me and said that she had had another bad night suffering from sickness and diarrhoea. Her nurse had once more connected her up to have IV fluids and samples of her blood and stoma bag content had been taken. It looked very much as if she had picked up a bug – hope it’s not norovirus - which in her current state could represent a real problem which at the very least would delay her discharge. So began a nervous wait to hear what the doctors would say and whether the consultant in London may have to be consulted.
In truth I was not in the best of spirits having myself had two restless nights and so this was always going to be a difficult day given that I was convinced that Val was not helping herself. Since the onset of her autonomic neuropathy Val had always had a troubled relationship with food almost bordering on an eating disorder that had a number of facets to it.
Catering for Val means utilising a very restricted palette in terms of what she is able to eat as Val’s stoma means that she cannot tolerate fibre so most fruit and vegetables are not suitable. So if you take away the vegetables from a traditional Sunday lunch she is left with the meat, Yorkshire pudding, the potato element of the meal and gravy – and then she won’t eat all of it. In the current situation this worried me because I was concerned that the doctors and nurses would not understand this and would think having given her a plate of hospital food and finding that she had left half of it would conclude that she had a problem when in fact it was normal for Val.
In addition because she has no saliva she needs her food garnished, depending on the dish, with additional gravy, mayonnaise or custard. Patients in hospital need to eat, particularly at a time when they feel least like doing so, and so the food needs to look tempting because we do eat with our eyes and yet hospital food can look anything but tempting. And so I had a long discussion about this with Val because I felt she was rejecting food because of how it looked and she needed to understand and accept that it was hospital food. Yes it might not look like home cooked food but it was what you were given and Val needed to hold her nose and eat it!
Another issue is that although she won’t admit it Val is a bit of a snob and this also affects her view of food. Val had been told that she could have scrambled eggs for breakfast but was inclined to turn this offer down because it would not be prepared as she would like it. My response was so what. At the end of the day we are talking about hospital food, accept it, hold your nose and eat it.
Of course I understand that this is all against a background of vomiting leaving her with a burnt feeling oesophagus, and ironically an overworking stoma. I had picked up a leaflet at the hospital entitled “Moving On from Critical Care” and in the section on Eating and Drinking it states:
“Regaining your appetite since becoming ill is sometimes difficult. You may find food does not taste the same; it may seem to taste metallic or be saltier or sweeter. It is important for your continuing recovery to persevere and try to eat well.”
I told Val that she needed to persevere and not treat food as her enemy when in fact it was her friend and was the key to her leaving hospital. As it was she was once again hooked up to a bag of fluids, thereby restricting her ability to build up her mobility and strength. Perhaps I wasn’t being as sympathetic as Val might have been expecting but sometimes these things have to be said. I have always had a problem with people who I think are perfectly capable but who choose to not to help themselves.
In an effort to tempt Val, I said I would get her something from the cafeteria if she fancied something and as a result I brought back a ham and tomato sandwich and she eat half of it – I had the other half.
I also asked Val’s nurse if I could speak to a doctor to hear for myself what the issues were and what was being or planned to be done and, by the time the doctor came Jason was with us. The doctor did not seem overly worried and told us that so far the sample had not grown any bugs and if that remained the case then they would give Val something to slow down her output through her stoma. He emphasised what we had been saying that to eat and drink then she wouldn’t need the drip and this would enable her to be more mobile. We explained about Val’s relationship with food and he said there would be no problem in ensuring extra gravy, or mayo or custard if that was what was required to help her eat and her notes would be written up accordingly and when told about the issue with her oesophagus he said that they could supply her with a spray.
For her evening meal Val had ordered a jacket potato and in preparation for that she had asked me to take in some extra butter which I had done. I stayed with her until the food arrived and when she took the foil off the potato it looked dried up but when she cut it in half the potato itself was fine and it came with two pats of butter and a large tub of grated cheese. I decided to stay with her while she eat it, and she did use the extra butter, and she finished off half of the potato and most of the cheese followed by a pot of yoghurt.
When we spoke later that evening Val said that she had given herself a good talking to and had decided to try harder which is what I wanted to hear. Maybe my less sympathetic approach had got the reaction that I maybe subconsciously had been hoping for. Sometimes it takes a bit of tough laugh and I firmly believe that Val, like any other patient, has to realise that I am affected by what is happening. The diary shows that since Monday April 17th, there had only been one day when I, like Val, had not seen the inside of a hospital. As hard as you try the one who is the patient needs to realise that you are only human and you will have off days which to some extent you can mask but not always. Like them you will feel down or tired and that to some extent your emotions reflect theirs and what is happening with them and as the Rag and Bone Man sings “I’m only human after all.”
Wednesday May 11th.
A better day! Val told me that she had thought about what we had talked about yesterday, had given herself a talking to and resolved to persevere.
By the time I had arrived at 3.00, Val had eaten half a lasagne and yoghurt for her lunch. I took her in an M&S chicken and tomato pasta salad which she enjoyed along with a crème caramel Later she would eat two egg and mayo sandwiches and so on the food front she was doing better to the extent that she was no longer hooked up to a drip giving her more scope to be mobile.
During the course of the night the catheter had come out of her rectum and the doctors had decided not to replace it. This meant that by accident rather than design, Val needed to make a start on managing or controlling her new bladder and could begin to do the pelvic exercises that had been recommended. I helped Val walk to the toilet a couple of times and her walking did seem better that the day before.
Val now just has the stomach drain in and the doctors have said that she may well be sent home with that in situ although they will shorten the tube and place a bag on the end.
It is important to talk about non-hospital things and so we talked about family, books we are reading, the election campaign, Brexit and whatever else came to mind. Towards the end of visiting, the nurse came and told us that Val’s room was needed for another patient and that she would be moved into a bay with other ladies. The news was phrased in such a way as to make us think Val had a choice but in reality she was on the move and as I told her she would be moving nearer the exit door. It provided an opportunity to pack up her belongings and meant that I could bring some things home.
Val’s Estimated Discharge Date is now recorded as May 13th. We shall see.
