Posting here for traffic.
DF in hospital and we are allegedly at 'the end' but I am not sure if a mistake has been made....
I’ll try to keep the medical history brief, but it’s been eleven long months so distilling to the essentials is hard.
DF admitted to hospital due to shortness of breath. Fluid discovered around his lungs.
Lungs drained of litres of fluid, and sent home after a few days.
Within 24 hours, shortness of breath returned. Back to hospital
More fluid build up. Drained but kept returning. Doctors say that are going to think about a solution.
Four weeks later (regular draining) they are still ‘thinking’. They now say he has picked up an infection which makes some of their ideas more challenging.
Seven weeks of nothing happening other than DF weak due to prolonged stay, fluid on lungs and infection.
Doctor announces he will try to operate to glue the tear that is allowing fluid in – yay.
Hospital were surgery needs to happen has no beds, we have to wait. Meanwhile DF has to stay put (seems to be getting worse).
Hospital says he now has a kidney infection. They give him water tablets to try and flush it out.
TWELVE weeks later, there is a bed. He is moved.
New hospital says that he is too weak to operate due to being in hospital for 12 weeks. He has to get stronger…
DF rallies and tries to eat/sit up etc to get ‘stronger’. Water tablets continue
Hospital tell us that the water tablets weren’t a ‘great idea’ as they have not helped with the fluid. Not sure if they can operate.
He is returned to original hospital with no plan and a definite kidney issue.
At this point, I can’t go into everything that happens but cue 8 months of tinkering and experimenting with tablets and two ‘back and forth’ between hospitals where ultimately nothing happens.
Fast forward to two weeks ago. DF now very weak. Multiple bed sores, fluid on lungs and around other organs, kidneys very weak – wee very brown and minimal.
We keep encouraging him, telling him they know what they are doing, keep strong etc etc. DF trying to be a trooper but very tired. Odd spurts of appetite and energy. Perfectly coherent, frustrated but keeping the faith.
Two Monday’s ago, we went to visit in the morning and he was completely changed. His pupils were dilated, he could barely move and his speech was almost completely gone – like he had a huge tennis ball in his mouth. It was immediately apparent that he had suffered a stroke. I asked the nurse what had happened and he said he didn’t know. I asked for a Docotr but he wasn’t due till the afternoon. I found the head of the ward and told her that he had clearly suffered a stroke and was told that there was ‘’no record of this happening’. She wouldn’t look at him.
I waitied all afternoon for the consultant to do his rounds and when he came he examined DF and said if might be ‘thrush’ making his tongue fat…. I pointed out that he couldn’t move, and his pupils were fixed and dilated. It was also completely obvious that the speech wasn’t caused by thrush on his tongue (although I believe a tongue can swell as a result of a stroke). He was struggling to form simple words and hugely frustrated. They would not concede he had suffered a stroke or take him for a scan.
The next day he was worse. No speech. I told them he was worse. Nothing happened. This went on for five days. On the sixth day they scanned him and said it wasn’t clear that a stroke had happened (even though my DF is now ‘locked in’ unable to talk and now unable to see.
Eventually someone said in passing (rather than formally to us) that yes he had suffered a large stroke about a week ago followed by a series of smaller strokes so they would start administering blood thinners (too late obviously).
DF is now just lying there unable to communicate, see or move.
A week ago, they told us his kidneys had failed completely and there was a build up of potassium that would eventually cause his heart to stop. We asked what our options were and were told the kindest thing would be palliative care. We were already angry but in our devastation agreed to what ever was the least upsetting for DF at this stage. Last Tuesday, they took the fluid drip away and withdrew all the treatment they were giving him and told us it would probably take a few hours. A priest came. It is now Monday. He is exactly the same. Locked in staring at us. He has not died. His breathing is steady. No doctors come in to the room now because he is on ‘palliative care’ but I am terrified that they have made a mistake. Because of what has happened, I have no faith in anything that they say and I ask the nurses what they think and they shake their heads and say that what is happeing is ‘terrible’.
I don’t know what to think. I love the NHS, I am not interested in suing or trying to be litigious but I am scared to death that DF has had no fluid for 6 days now and this may be a terrible awful mistake.
Does anyone medical have ANY opinion that will either spur me to demand he is re-examined or give me some peace of mind? Thank you.