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I had hoped my last post on Neu’s health would be the last for a while, things were going well and he was feeling so much better but then staphylococcus bacteria pulled the rug out from under us.

Neu developed signs of an infection in the catheter tunnel, we had been warned that there is a risk of infection with peritoneal dialysis which is why patient and carers have to take such extensive precautions with cleanliness, we thought we had followed instructions to the letter but there was no doubt that the catheter tunnel was inflamed.

We went back to the clinic straight away, the head nurse Valeria, confirmed our suspicions, a swab was taken and the doctor ordered Neu to be given an antibiotic injection intravenously, to be repeated every five days. It was generally agreed that Neu had picked up the infection from our water which gets pumped up from natural underground reservoirs. We normally only treat the water we drink, now we would have to devise a way to treat all the water to protect him (and the rest of us) from further infections, at least until we found out what the bacteria was. Valeria said the antibiotic would kick in quickly and the infected area should look a lot better by the next day.

Unfortunately it didn’t.

Back to the clinic, the swab tests had come back negative, so we were none the wiser as to what we were dealing with and therefore what the best antibiotic would be. The intravenous antibiotic was effective against Gram Positive bacteria, so the doctor decided to give Neu a daily dose of antibiotic against Gram Negative bacteria taken in tablet form, whilst continuing the intravenous antibiotic at five day intervals.

Two weeks later the infection was still there, another swab was taken and the doctor advised us to be careful about which brand of the antibiotic tablet we bought, I hadn’t brought the packet with me and was unable to remember which brand we had previously purchased, though I knew it had been a generic brand. In Brazil there are many generic brands available which are often considerably cheaper than the original; however the doctor said that in many cases the quality of these generic brands is suspect and she believed that Neu’s lack of response to the medication was due to him having taken an inferior product.

The doctor prescribed another Gram negative antibiotic to be injected intravenously on a daily basis, lucky I know how (having had to inject the dog!) there is no one at the health centre in the village over the weekend so if I didn’t do it, Neu would have to travel in the hospital in Beberibe, Neu said that frankly he trusted me more than he trusted the nurses there anyway, we didn’t tell the doctor as I was sure she’d have a fit.

The following week and we were back at the clinic. Neu was taking high doses of three different antibiotics but I thought that Neu’s infection was getting worse. Claudia, the nurse who attended us that day, agreed with me and rushed Neu along to see the surgeon who had carried out the initial operation and who happened to be in the clinic that day.

The surgeon took one look and said Neu had an abscess. The results of the 2nd swab had come back that morning, a staphylococcus infection which confirmed his opinion that the infection had been picked up during the initial operation. Were as we had thought the infection had entered the tunnel at the point where the catheter enters the skin, the surgeon said the seat of the infection was at the further end of the catheter, just before the catheter entered the peritoneal cavity, what we were seeing was just the infection finding its way out. There was no alternative but to remove the catheter, so rather unexpectedly Neu was to have surgery later that same day.

As Claudia was organising some last details she said it was such a shame this had happened now as Neu and I were next in line to begin training on the dialysis machine, this is something we have been waiting and hoping for. The machine carries out the dialysis automatically during the night and would free Neu of dialysis during the day, allowing him to return to fishing, which he is desperate to do, we were so disappointed to hear this would now have to go on hold.

The clinic doctor said that after the surgery to remove the catheter, Neu would have to have his dressings changed every day which she said could be done at our health centre, I asked if I could change his dressings at home but she said no way, they had to be changed by a health professional in a clean environment. I explained how precarious health care is in the village, our health centre doesn’t even have any doors, there is no one there at the weekend and when Luan’s stitches were removed, the nurse used a pair of scissors that had been left on the table, no attempt to clean them let alone sterilise them, the room where we carry out Neu’s dialysis is possibly the cleanest place in the village, certainly its cleaner than the health centre. The doctor questioned whether Neu had indeed been taking his injections as ordered, I confessed that I was administering the injections, she was anything but pleased but Neu said we really had no choice. I’m not a nurse but I will only do what I know I can safely do, perhaps the numbers of trained nurses amongst my aunts and cousins and an uncle who trained nurses, has had an osmosis effect on me.

We were still left with the problem of where Neu would have his dressing changed, the doctor said perhaps Neu could be admitted to hospital until the Friday and she went off to arrange this. Shortly after we were told everything had been organised, Neu would stay at the hospital until Friday and we should head off there now.

On arrival at the hospital we were told the surgeon hadn’t arrived yet, there would be a long wait and the receptionist had no idea what we were talking about when we said Neu was to be admitted, she said he was down to be released probably the next morning, we should talk to the nurse in charge when Neu was called for surgery.

Neu was finally called to the surgical department where we explained about him being admitted, more blank looks but the nurse said she would see what could be done. I should wait in the corridor until she came back with more information. Neu was whisked away, I stood in the corridor wanting to scream with frustration, I rang my daughter instead and felt considerably better for it.

Two hours later I was still standing in the corridor, I asked another nurse if she could find out what was happening, she did her best but there was still no definite news as to whether or not Neu would be admitted, he was still waiting for surgery, I was advised to go home and ring the hospital first thing in the morning.

I got home at 9.30. Our lovely Siamese cat, well she’s not actually ours but she adopted us after nearly starving to death whilst trying to feed her litter of kittens, I fed her and she became a regular visitor and then moved in when she became pregnant again, now whilst I was feeling completely exhausted and down after the stress of the day, she cheered me up no end by choosing to lie beside me to have her kittens. New life, what joy and a wonderfully attentive mother she is, four lovely dark kittens and all are doing well.

The next morning I rang the hospital and was told Neu had been admitted, he was fine and the surgery had gone well, though it hadn’t started until later than expected, poor Neu had been without food or drink since 6 in the morning, finally being operated on at 9.30 at night.

I rang Neu’s cousin Luiz who lives in Fortaleza, he had agreed to visit Neu and to take in the daily dose of antibiotic that Neu needs, I had been advised not to leave it at the hospital, it would probably vanish if I did. Luiz said he was on his way to the hospital and would let me know any news. Later that morning Luiz rang to say that Neu had been discharged, another nurse had come to say he was to stay but the doctor said he was to go, they wanted to know when Neu would be picked up.

One of Neu’s friends who is a taxi driver happened to have taken someone else into Fortaleza, so he agreed to collect Neu, unfortunately the car broke down on the way home, Neu arrived at 4 pm having had nothing but a cup of coffee for breakfast, a very long time without food but in remarkably good humour.

As we had to return to the clinic to have Neu’s dressings changed I asked if we could make the most of our time there and begin the training for the dialysis machine, Claudia said that would be a good idea, especially as Neu’s next surgery had already been scheduled for two week’s time.

I had my first training session yesterday and hope I will pick it up quickly, it shouldn’t be too difficult as the machine itself prompts you at each stage, it’s really the cleaning routine that has to be completed step by step and remembering not to touch the sterile components (or you have to begin the process again from the beginning) but just like the first lot of training we had to do, which seemed daunting at the beginning and now seems second nature, I’m sure we will pick it up.

Today, to satisfy the doctor that I am capable of injecting Neu, I prepared the injection and gave it to Neu in front of a nurse, injecting into a small vein in Neu’s hand, the nurse who observed me said I past with honours, thank goodness for that.

©Claire Pattison Valente 2012


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