Much as I’d hoped never to see the hospital emergency department ever again, we’re back.
Having not found anything last time we were here in September, when the pain inconveniently (as far as a diagnosis was concerned) disappeared, it returned just over a week after Neu was discharged.
After discussing our options and possible causes with his dialysis doctor, it was agreed that we would try a diet based approach as it was entirely possible that he was suffering from irritable bowel syndrome brought on by the large amounts of antibiotics he had taken.
Unfortunately a diet for irritable bowel does not combine that well with a diet for kidney failure, there are so many foods that he cannot eat for the one but should eat for the other and add to that his own list of foods he refuses to eat, in no time at all he was down to fish soup, by which I mean fish cooked in water and not much else, fruit juices and herb teas.
He was getting thinner, now down to 62 kilos and the period between the bouts of pain was shortening.
When he had an attack of pain, his stomach looked like it was auditioning for Alien and the sound of gas gurgling could be heard on the other side of the room. The pain was so intense that Neu would be beside himself and even with very strong pain relief he was obviously suffering.
Having had a particularly bad night on Sunday, we decided enough was enough. Neu’s whole system was slowing down and having watched my father go down hill after a miss diagnosed twisted hernia, which ultimately led to his death, I felt I was watching that horror film all over again.
It was obvious to me that Neu has some kind of intestinal obstruction and surgery is possibly the only answer but the only way to know that was to go back to hospital.
Neu did his dialysis session at the clinic as usual and his doctor wrote a referral letter explaining her fears, which we then took to the hospital.
There are advantages to being obviously foreign in Brazil, people remember me and so it was at the hospital. We were greeted with smiles and “oh you’re back” as we were processed through the various stages far quicker than we had been the first time round. Being as I am now a dab hand in the rather bureaucratic system it was far less stressful and in no time we were through to see a surgeon.
Not a surgeon we’d seen before but she was very efficient and listened carefully to our ever lengthening tale. She gave Neu a thorough exam, including some intimate exploration which I just know would have left him mortified and then said she suspected Crohns disease.
It wasn’t much of a surprise to me, I had mentioned it to doctors previously as I well remember all the suffering a friend of mine went through before he was diagnosed and for many years after. Neu’s symptoms, while not identical, were very similar, though poor Neu, as if he hasn’t suffered enough.
We were admitted, by which I mean he got a narrow trolley of the sort used in ambulances, which sits about a foot off the floor and I get (wait for it, wait for it) a plastic chair! Yeah joy of joys!
This time there is no more room in the corridors, I’ll just let that sink in a bit, no more room in the corridors! so we are still in the medication area. Neu has a tube up his nose and down into his stomach which is siphoning off what ever was in there.) qqh
We have seen 6 doctors so far, Neu’s had an abdominal x-ray which rather bizarrely showed he has a hole in his pelvis, about the size of a 5p piece, they asked if he’d ever been shot, to which he replied “Not that I remember” which made me laugh anyway.
He is now waiting for another CT scan, the results of that will dictate his treatment, but it’s obvious that I cannot afford to be complacent.
Last night Neu was given pain relief, the nurse told me he could have it every 8 hours but having had a little snooze in the early hours, I realised that we had passed the 8 hour point and the nurses hadn’t been back.
Thankfully Neu was not in pain, but he hadn’t been put on a drip either, so I went to ask about it. The nurse in charge of the medication section said that because Neu had been admitted we were now under the section “observation 1”, I would have to go and ask them. The nurse there typed Neu’s name into the system and nothing came up, we sorted it quite quickly, a spelling mistake in his name, but then had I not said anything, how long would it have been before they realised that one of their patients was missing? He was put on fluids and will hopefully feel better because of it.
I’m hoping that this time we get a definite diagnosis and more importantly, a correct diagnosis but I’m prepared to have to fight for it. I’ll keep you informed