Neu’s medical team, Dr Luciana, Dr Alini and Dr Carla are fantastic, they are wonderfully reassuring, making it clear that they will not send Neu home until they are certain that the problems (because it now seems we are dealing with more than one) have been resolved.
We both feel confidence in his doctors and have been impressed by their dedication but the situation in the hospital is desperate and the doctors and nurses are expected to work in conditions that are frankly ridiculous. I will elaborate on that later but first an update on Neu.
Having had another painful relapse, just when we thought he was getting better, we had a visit from a surgeon who said that from Neu’s history, various scans and x-rays he believes Neu’s problem is two fold :
1. The infected mass is most likely from a burst appendix that the body sealed off when Neu was given antibiotic treatment for peritonitis back in June but the lump is not large enough to be causing the constriction of his intestines.
2. The most probable cause of the intestinal pain is what they call "adherences" a common and unpleasant after effect of abdominal trauma (severe bruising, peritonitis, appendicitis etc) where the body creates fibrous growths, long strands which can wrap around the intestines. These will sometimes unwrap, leaving the patient pain free for a time but maybe 6 months to a year later the problem will return. They can, as in Neu’s case, become twisted and therefore not release, causing partial or total intestinal obstruction.
The surgeon has advised micro surgery using a video camera and lazer, a method that will cause minimal trauma to the abdomen while allowing them to see the fibres and cut them away.
Before the surgery can be done, Neu needs another CT scan so they can see what has happened to the lump. They don’t want to cut in to it by mistake but also, if it hasn’t reduced, they will want to surgically remove it.
Meanwhile Neu oscillates between eating a liquid diet or at best mashed food, until his intestines rebel again, the pain comes back and he goes back to nil by mouth and a glucose drip. It’s no fun for him but he is, as always, remarkably cheerful.
Now the problem we face is getting Neu’s surgery on the agenda and that leads me to the situation in the hospital.
The Hospital Geral in Fortaleza (HGF) where we are, is the hospital of reference for the whole of the state of Ceará, which covers an area of nearly 149,000 square km (approx 57,500 square miles) and with a population just under 9 million. The hospital is also a point of reference for the neighbouring states in several areas of specialism but as I have described here before, the situation within the hospital is not as it should be, with the emergency area dreadfully overcrowded and materials often in short supply.
Last week the nurses told us they had no face masks, then no gloves, then were out of the most used size of needles. They are out of, or in short supply of the various types of tape used to secure dressings. They do not have the type of catheter they hoped to fit for Neu’s dialysis and the pharmacy is out of numerous medicines, with patients being asked to supply their own. This is a limited list, only covering the things that have directly affected Neu.
Unfortunately the situation is worsening and now all surgery, other than those deemed essential to life, have been cancelled due to a lack of materials. On average there are only 20 surgeries taking place per day.
Speaking to one of the resident doctors I was told the problem has been caused by a failure of administration and a lack of funding from State and Federal governments. The hospital is constantly in debt to suppliers and so incurs interest charges on the money owed. The situation is never resolved as with each order the hospital pays off the previous order but only half of the new, incurring more interest charges and consequently the burden of debt grows. To try and clear the debt, supplies are cut but how can doctors and nurses safely treat their patients without even the most basic of supplies.
When we were here in June, one of the nurses told us they had not been paid for 2 months, they are still behind on their salary payments as are the cleaning staff.
There would appear to be a serious lack of basic housekeeping sense from the hospital administrators.
For example, in our room is a man who, having arrived for what was a scheduled operation to remove gal stones, was told shortly after his arrival that his surgery had been cancelled but that he would remain in hospital until it could be rearranged.
On Monday, exactly one month after he arrived, his surgery finally went ahead. Unfortunately during the month of waiting, his gal stone had grown and is now too large to be removed by the type of surgery they had undertaken. He is now back in the room, still with his gal stone, waiting on a more intrusive form of surgery.
He is far from being the only patient who came in for a short stay and having had their surgery cancelled, feels like he has taken up residence.
It doesn’t take much imagination to realise that keeping a patient and his carer waiting in hospital, feeding them, providing medicines and doctors, nursing care and cleaning staff, not to mention repeating exams, is not cost effective and directly leads to the over crowding of the emergency area where people are waiting for a bed on the wards.
There are areas of waste that horrify me, mostly that of plastic and food.
Every day we get a package of clean sheets and clothes for our patient, each kit comes in a plastic bag which is then thrown away.
Our food is served in disposable plastic to be eaten with disposable spoons.
Breakfast; A small cup of sweet black coffee with a larger cup of long life milk, served in disposable plastic cups. A bread roll, individually wrapped in a plastic bag.
Lunch; Meat, chicken or fish (no choice, just get what your given) with rice and beans and a vegetable in polystyrene trays with a lid. A pudding in a small plastic cup with lid, 2 plastic spoons.
Dinner; Meat or chicken soup (every single day) in large plastic cups. A bread roll in a plastic bag.
Supper; A cup of long life milk in a plastic cup. A bread roll in a plastic bag.
Gosh someone worked hard on that menu.
I was told that it is my right to ask for and receive coffee without sugar but it holey depends on who is serving in the canteen as to whether or not they will go off and get one from the small supply which they like to reserve for the doctors. More often than not I’m told their isn’t any. Some of the carers (those who cannot leave their patient for what ever reason) are served their meals bedside, rather than having to go to the canteen, so I spoke to the nutritionist to ask if I could perhaps have my breakfast with Neu, as I know they serve some of the patients sugar free coffee. Her response was that I could only have it if I suffered from diabetes, if it was purely a health choice, then no. Is that not the most bizarre way of thinking? You can only choose the healthier option if you are sick with an illness you might not have got had you chosen the healthier option!
There are no vegetarian meals (though I would imagine if you requested one in advance they would have to provide it) and I haven’t seen salad since we arrived nearly 3 weeks ago.
The food is brought in from out side but the lack of variety, choice of food or portion size, means a great deal of food goes into the bin, along with the plastic trays and spoons (ever tried eating fried chicken joints with a weak plastic spoon?).
For those poor people on trolley beds in the corridor, lunch time for their carers is their one advantage over us on the wards. They eat their meals in the canteen (on tin trays divided into compartments) and are served after the nursing staff who get a greater choice of foods. Arrive early enough and you might just get a spoonful of salad before it runs out.
None of the food is prepared on site. I thought this was because of the extensive building works that are under way, or are sometimes under way as there seems to be more hold ups than work going on, but was told that there is a brand new kitchen and canteen all ready and waiting, they just haven’t opened it.
Hospitals naturally produce an awful lot of waste but so much here seems unnecessary and is so environmentally damaging. The doctors and nursing staff are becoming increasingly frustrated. Yesterday Neu had to have a new catheter put into the main artery in his leg, unfortunately the doctor who was doing this minor surgery was having difficulty and called for the assistance of a surgeon. When the surgeon arrived she was furious to find there were no more sterile gloves on the ward, they had to send to another unit to get some while another doctor pressed down on the vein in Neu’s leg to stop him bleeding out. As she rightly said it is impossible for surgeons and doctors to work in these conditions and then the patients blame them when things go wrong.
So I would like to take this opportunity of saying that we do not blame the doctors or nurses one bit. Our doctors as I said at the beginning, are wonderful and I know they are doing there best in circumstances that are beyond their control. I have also been impressed by just how many female doctors and surgeons we have encountered, it’s good to see.
I also do not blame the doctors for having decided to take strike action, not something they do lightly but perhaps the only way of getting the attention of government and resolving this crisis of care.