Once again as I dozed off in they of course woke me for my obs, this was getting a bit boring now, keeping being disturbed when you finally fall asleep. It’s like some kind of torture process, sleep deprivation. I again gave up and turned to social media to entertain me, Andrew was awake early and messaging he planned on being at work early and available to come to the hospital for ward rounds.
A doctor came onto the wards, not mine, and was discussing referrals, she explained that it was Friday and if nothing happened today then it would be Monday at the earliest for her patient. It struck me that’s how it works here slow, or super slow, I was bereft, I started crying realizing another weekend locked away here was on the cards. I couldn’t calm down. The nurse in charge found me tried to calm me and said lets see what the doctors say, they are on the male side they shouldn’t be too long.
I text Andrew straight away to give him warning and he headed in, he was soon by my bed and giving me a hug, cue more tears. I told him I couldn’t cope anymore I had come in sick, I was now worse and most of that was due to the hospital leaving me on the wrong ward for eight days. He of course understood and said well if the MRI isn’t planned for today, they better get it planned for today. Enough was enough.
I wanted a shower and hair wash, but we waited and we waited, finally the minute I get in the shower as the nurse didn’t think they would be on the ward for a while, they came to the shower room and told us they had arrived on the ward. Well they would just have to wait for me! Another friend came to visit and we warned her the Drs were coming and it might not be pleasant.
The doctors crowded round my bed and I don’t know how but all hell broke loose, the main man felt that the MRI was not going to show anything? But didn’t actually give any form of explanation or suggestion of what it might be. By now I was distressed, thank god my friend was here holding my hand, Andrew was trying to explain that they needed to contact Prof Aziz in London who is an expert in all things Gastointestinal and Ehlers-Danlos. I explained my frustrations with the hospital the eight day delay to get to the correct ward, the assurances that the gastro team had been made aware of my presence, the promises of ultrasound , pain management team and then a colonoscopy via GA to be booked as an urgent case, which was attempted to be booked as a Gastroscopy under GA. I tried to explain I had lost faith and trust in the hospital and he said if you want to go home then that’s your choice. No our choice is to get the best treatment available via the NHS, that it is right first time, every time. He suggested we all calm down, as it was getting us nowhere. I tried to explain why I was so upset that from the day of my arrival I had been dumped on the wrong ward, I had been told day after day that various things would be done and nothing had happened, even to the point of Monday seeing the Gastro Consultant he had said a move to ward two and an MRI, the move taking two days and so far the MRI taking five days, neither acceptable in my view, by now I was near hysterical. He kept just dismissing us saying if I wanted to go home, I was saying I want to go home because I’m depressed, through lack of action, lack of sleep and sheer damn incompetence. The thing is when the doctors do their rounds there are a few of them, one of them working at a computer that they take from bed to bed, three that trail around like puppies, a nurse and the big cheese. I don’t know who did what but the next thing there was a porter to collect me to take me for my MRI, I think we had made our feelings clear. It happens today or PALS would be finding out. I was whisked out and didn’t even get to finish the consultation with the doctors so left that to Andrew. He insisted they took Prof Aziz’ details and make contact with him, what did they have to lose? They knew nothing about EDS yet their patient was a sufferer of the condition, get the help. Apparently they also discussed a weekend pass, but something was mentioned about gastro beds being so in demand, so would they be able to hold mine?
I went to the MRI I sat in the waiting area for ages then the radiographer came out with a jug full of liquid and asked me to drink it all!! Bearing in mind I’ve been sipping for weeks this was going to be tough. I started with cup one, I had 45 minutes to do this in, it went down but it tasted not too pleasant. The intention was for it to coat the lining of the small intestine. Half hour in and I was nauseous and cramping, two of the warning signs he had given me, so I stopped. By now I was ready again they took me through and laid me down, they I got hot, then ran cold. This was awful! Another thirty minutes passed until it was my turn and finally I was in the machine, laying face down, with my shoulder above my head, I was so uncomfortable. Be brave this couldn’t last too long, I lay there thinking I was sunbathing I Florida a trick someone suggested in conversation the other day, it nearly helped until I wanted to throw up! Finally it was over and I was to be taken back, it was gone 3pm, I knew Andrew had planned to leave at 2pm so I would have missed him.
Imagine my joy to find him sitting on my bed, that’s why I love him, he waits for me, he won’t leave me! He had worked out to the very last minute the time he would have to leave until his dreaded disco that evening. We squeezed in a catch up on what had been said when I had gone, then sadly it was that time, but the good news was the MRI was complete.
We also found my hospital notes laying on the bed, now Freedom of Information Act states that I can read my notes, as can my next of kin, so Andrew was looking at them and had been for five minutes, when a nursing assistant challenged him. I then took them off him and said well I would like to read my notes I’m allowed they are my notes I know I’m allowed I read them on ward 20, she said no your not and took them away from me, I was flabbergasted. This hospital need to learn the law because the nursing assistants don’t have any right to behave in that manner. My other friend who works in the hospital witnessed most of this and said not to worry she is applying for these notes, I will go and get you the form now! Within five minutes I had the form by my bed.
No sooner had Andrew left than the dietician came back again, she asked how things were and I said about the same I explained about the state of the hospital food, so Andrew was bringing in food from home. I was trying to eat but it hurt, I was doing my best. I knew I was depressed but that was circumstantial rather than clinical, I told her I just needed to be at home with my loved ones, getting rest in my own bed. She explained that her recommendation now was for IV nutrition but this would have to be agreed by the doctors, she would put it in my notes. Once again this conversation was through floods of tears, I just couldn’t keep it together today.
I laid back and rested with my friend for the rest of the day she could stay until 7:30pm, we discussed what should happen and what I should do if it doesn’t. We made some notes of what the doctors had said in case we need to make this all formal, a little further down the line. The night staff came on just before she left and the nurse in charge came over and explained that she would need to change my cannula and hang more fluids as I had “refused” earlier. Now my friend had been their all day and I had not refused at all, I hadn’t even been told I had been prescribed more. At 7am when they ran out they couldn’t reattach me as there were none written up, after I got back from MRI nobody asked me about hanging fluids, let alone gave me the chance to refuse. I was back in tears again more lies, do they think I’m as stupid and senile as some of the patients on this ward?
My friend had to go but I had calmed down enough to assure her I would be ok. The nurse came back to do my cannula and sadly that got too much for me again, another wave of emotion flooded over me, I told her I just needed to go home. I would get better nourishment at home, better rest and better support from my family. I was getting sicker and more depressed day by day it was getting ridiculous. She said we need to find out what’s wrong, I said well the Dr doesn’t think anything is going to show on the MRI so then what? She said well the dietician has suggested IV nutrition but we need to get the doctor to approve, would they? It took a while for me to calm this time, I knew I was stuck for another night, I was devastated. She started with the cannula, a new one was placed in my right fore arm which seemed better than the one in my hand. Finally the blown one in my hand was taken out (I forgot to mention it blew when they put the contrast in for the MRI). She suggested Andrew come up when he finished work which would have been possible but he had things to do at the shop, because he had got caught here earlier in the day. So we decided to speak on the phone and then FaceTime at bedtime.
That was hard as well saying goodnight when all you want to do is curl up together, he placed his iPad on my side of the bed so I was laying where I should be and this made me sad. Cue more tears, so glad they had hung more fluid I have cried out half a litre !! We chatted about what I needed to say to the doctors if they made it to ward rounds early. Will the nutrition start immediately? What about the weekend pass? Ultimately I have decided that I am wiling to pay to see Prof Aziz at his private clinic and get help, he will know!! We said goodnight, he promised to come up in the morning and would leave early afternoon. That way if it all goes a bit pear shaped he can take me home!
I laid down and settled, my brain wouldn’t switch off though I kept thinking about all the lies and crap I’ve been through over the past ten days! I kept replaying over my head could anything different have been done? So sleep evaded me, I got some, then I was awake again, then I was asleep, it was all just too much by 5:30 and I gave up……