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Having thought Neu was over his abdominal pain which caused him so much suffering back in June and for which we spent 8 days in the general hospital, my heart sank when he told me, on his birthday poor thing, that the pain was coming back.

Saturday 5th September

The pain became intense, far worse than yesterday and Neu vomited several times. We made it to the dialysis clinic with the help of some heavy-duty pain killers but the pain was still there and returned with a vengeance while he was doing his dialysis. Neu’s blood pressure dropped dramatically, he was extremely cold, trembling and sweating and his dialysis had to be stopped while they stabilised him.

The doctor ordered a super strong pain-killer and said after examining him, that she suspected appendicitis. Neu’s dialysis was resumed once the pain-killer had kicked in but the doctor said that we would have to go back to the general hospital once his dialysis session finished. I had thought this was likely so at least this time I was prepared with blankets, clothes and toiletries.

At the hospital Neu was processed through the first section of the emergency department quite quickly, the nurse on duty recognised us from the last time and as the doctors referral note stated appendicitis we were sent through to the medication / observation area where we spent the rest of the day on hard plastic chairs waiting. Neu was told to remain without food or drink as surgery was likely. Thankfully the pain relief Neu received at the clinic seemed to have knocked the pain on the head and he remained pain-free.

Sunday 6th of September

Neu was sent for an ultrasound scan, the radiologist said she could see what she believed to be a small tumour on the point of his appendix, she suspected that his previous peritonitis had been caused by a burst appendix, that the antibiotics he’d received had dealt with the infection and “cured” the appendicitis but that the appendix had now developed this small tumour which was probably responsible for the pain he had felt. The radiologist also saw a cyst which we already knew about, which is filled with clear liquid, thought to be dialysis fluid from when he was doing peritoneal dialysis.

Sometime later we saw Dr Flavio, the surgeon who had admitted Neu in June when he believed the peritonitis to be caused by the catheter aggravating the abdominal lining. Dr Flavio said it now looked as though appendicitis had been the cause and that Neu would have tomography to confirm it. Neu was examined by a swarm of doctors, some saying it was appendicitis, some saying it wasn’t. I asked about the possibility of diverticulitis or other intestinal problem but this was dismissed, they said he was too young.

Late afternoon, having spent nearly 24 hours on those hard chairs, Neu has been admitted to a bed in the corridor and I have the joy of sleeping on a plastic chair for however many nights again. Neu was allowed a fine porridge, first thing he’s had to eat since Saturday morning.

The view from our spot in the corridor

The view from our spot in the corridor

Monday 7th September

Saw another surgeon this morning, he was very nice, he agreed that appendicitis seemed most likely and in his opinion, as Neu is on the transplant list, it would be sensible to remove it whether or not the tomogram confirms it as the problem, simply because this will eliminate it from becoming a problem in the future. Unfortunately as today is a public holiday, the tomogram will not happen until tomorrow. Neu put on a light diet, once again the joys of hospital soup.

In the afternoon we saw another doctor, he made some odd assumptions about Neu’s condition and stated that Neu did not have appendicitis, his problem was due to Neu delaying his dialysis for too long, causing lesions to develop on his intestines, it was these that were responsible for the pain! I have no idea why he thought Neu had delayed his dialysis, this is simply not the case and I later confirmed with Dr Flavio that there is no sign of lesions anywhere.

Tuesday 8th September

Yet more different doctors today with more opinions, this is all very confusing. Neu remains pain-free thankfully but this is causing many of the doctors to dismiss his symptoms completely. In the afternoon Neu was sent to another hospital for a tomogram.

Wednesday 9th September

Yet more doctors this morning, I have to say that most of the doctors here are lovely but it is very tiring having to explain to each new doctor why Neu is here, what his history is and so on. As many of them then say “Well he is under the care of the surgeons so really I have nothing else to add” it all seems like a grand waste of their time when I’m sure there are other patients whom they could actually be helping.

Dr Flavio says the tomogram confirms appendicitis and Neu’s surgery will be booked. A huge relief to finally have a diagnosis.

Thursday 10th September

Neu was sent for another ultrasound this morning. A different radiologist said there is nothing wrong with his appendix, no sign of a tumour but she was concerned by the cyst which she felt should have a biopsy performed on it.

Yet another doctor said Neu does not have appendicitis, that the tomogram is clear, Dr Flavio is now off duty and so I can’t discuss this change of opinion with him.

Friday 11th September.

Another new doctor this morning, he said he was discharging Neu as his tomography was clear, I asked about the cyst which the radilogist from the 2nd scan had said should be investigated, he said “What 2nd scan?”. The doctor went off to check Neu’s notes and came back saying he was no longer discharging him.

Neu had a consultation with his transplant doctor in the same hospital, booked for this afternoon. The nursing staff would not let us walk round to the department on our own, we had to wait for a porter to take Neu in a wheelchair, which was a bit ridiculous as he has remained pain-free since our arrival and is quite capable of walking but what ever.

The porter arrived but had no idea how to reach the pre-transplant unit. I only know the route from the hospital’s main entrance, not through the labyrinth like internal corridors. We had a laugh with the porter as he spent 20 minutes pushing Neu up and down one corridor after another, with me running along behind, until we finally found the right place. It took far longer than it should have done but I was glad of the exercise.

Dr Claudia, Neu’s transplant doctor, said ideally his appendix should be removed and the cyst examined. If the cyst contains infected matter it could be dangerous if it was to flare up after a transplant, when he would be taking immune suppressant drugs. Dr Claudia  warned us however, that because of the state of the health service, an appendectomy was unlikely and they would probably say the cyst has to be investigated as an outpatient, in which case it will never happen. At least she was able to say that otherwise all his exams are in order for a transplant to go ahead if he gets a call.

Saturday 12th September,

More different doctors but no news.

Sunday 13th September

New surgeon says he will try and book the biopsy for tomorrow.

Monday 14th September

Neu was discharged. No biopsy, appendix still in place. We were told that Neu should return if the pain comes back and, if this should happen, have been provided with a letter to hand in to the nurses on arrival in emergency which would fast track him through to seeing another hundred doctors all with differing opinions and possibly no further treatment. I give up, though have to say am relieved now to be going home, 9 days and nights on a plastic chair has gotten the better of me.

Our time in the hospital was once again an eye opener. The staff were on the whole lovely hard working people but the amount of paperwork they have to deal with on a daily basis is staggering and takes up an incredible amount of their time. As an example, the first doctor we saw after Neu’s initial scan, had to re type the radiologists findings into the computer on some second form, they were then re-printed and the paper copy added to his file. This type of thing is such a waste of time and resources as busy doctors re-type information which should already be in the system and more paper copies are duplicated.

The staff, especially the nurses, are badly hampered by their cramped working conditions, having 70 plus patients and carers in the corridors leaves little room for maneuver, especially when porters are trying to wheel patients in beds or wheelchairs to and from places for exams or treatment or bodies to the morgue (this time we were in the corridor outside the resuscitation room, with the shrouded bodies of those who didn’t make it being wheeled past us with alarming frequency).

The lack of basic materials (needles, common medicines, micropore tape, to name only those that affected Neu) mean that the nurses cannot do their job properly and of course they are in the front line of complaints by patients and carers alike.

It is policy to give a patient a semi permanent access into a vein in their arm so any injections can be speedily applied. This access should be changed every 3 days, however when I mentioned Neu’s access was due for a change, we were told they had run out of the correct needles earlier in the week and had used their supply designed for babies but had now run out of those too, Neu’s access would have to wait. How can an emergency unit function correctly with a lack of such basic supplies?

One afternoon we had a visit from a couple of nurses, they were tasked with educating us carers in matters of basic hygiene which frankly shouldn’t have needed to be said but sadly, judging from the state of the bathrooms, definitely did. The nurses instructed us to flush the toilet, put toilet paper in the bins provided (in Brazil you cannot put the toilet paper in the toilet, rather it goes into a bin, or should do). To wash our hands after using the bathroom and after dealing with our patient, demonstrating how this should be done. To turn off the taps to avoid wasting water. To use the alcohol gell from the dispensers dotted around the hospital which would give an added layer of protection against germs. Not to bring food into the hospital and to ensure our patients took their medicines.

When the nurses had finished their little show, they asked if we had any questions, I said I didn’t have any questions but I did have something to say. Although I do not hold the nurses responsible for this, it does seem rather ironic that they tell us to put the toilet paper in the bin when there often is no toilet paper at all or the bins are overflowing. That there is no soap. That we cannot turn the tap off because the washer has gone and water has been pouring down the drain for days (and maintenance had been told). That there is never any alcohol in the dispensers. It all seems faintly ridiculous to be telling us to be hygienic if the basic means necessary are not there.

One of my fellow carers then pointed out that some of the guards on the doors (armed guards at that) refuse to let us bring in even bottled water, yet we see the doctors and nurses bringing in food all the time, even having take-aways delivered to the door and then often eating in front of us. If those who should be setting an example don’t, how can they expect us to follow the rules.

And in the end!

Neu had a resurgence of pain a few days after being discharged, I am now leaning towards him having an intestinal problem (possibly diverticulitis or something of similar nature). Neu was pain-free for the whole time he was in hospital during which time he was on a light diet, so his doctor at the clinic agreed that provided Neu got no worse, I could try treating him at home by modifying his diet and that a return trip to the hospital would most likely be a waste of time, I have to say we were mightily relieved not to have to go back.

As of to date Neu has thankfully remained pain free.