The first major setback

Before we could find out Joe suffered his first major setback. On Joe's sixth day at The Great Barn the phone rang at 10.30 am. It was Trevor, one of the care workers at The Great Barn. My heart sank as he explained that Joe had been taken by ambulance to the local hospital. Joe had been totally compliant with his eating and rest regime, but had woken up feeling very poorly. His temperature had dropped, he felt dizzy and the care staff were concerned that his blood pressure and pulse were still way too low. As a precaution they had called an ambulance, so that Joe could be given proper emergency care if his condition deteriorated any further. Trevor explained that Joe was understandably extremely upset at this development and that we should go straight to the hospital.

When we caught up with Joe in the paediatric ward I was relieved to see he looked quite calm. Trevor was sitting with him and they seemed to be having some banter about football. The next hour was taken up with the inevitable questions from several different doctors and nurses, and lots of form filling. By this stage Steve had taken over from Trevor in chatting to Joe about football. Then the doctors and nurses suddenly seemed to disappear all at once. Joe immediately took the opportunity to vent his anger at what seemed to him to be a massive setback:

"It's not fair. You all promised me that if I ate and drank everything put in front of me I wouldn't have to come back to hospital. How can I trust anyone? You are all liars. Now they are going to keep me locked up for longer. I know they are."

By this stage he was sobbing and our assurances that this was just a precautionary visit to hospital to check things out, fell on deaf ears. I explained to Joe that we were really pleased with the progress he was making, but that he had to understand that he was still very poorly and inevitably things would have to be taken one small step at a time. At this point Joe's case manager Fiona Ward arrived. She endorsed everything that I had said and promised Joe that this didn't mean an extended stay at The Great Barn. Joe, however, was not in a receptive mood. His frustrations were running high and he was alternately upset and angry. He told the senior registrar in no uncertain terms that he thought the doctors and nurses were a complete waste of time and that none of them knew what they were doing. Luckily she took it in good spirit, and having now vented his anger at several different people Joe seemed to calm down a little. Steve managed to get Joe back onto the subject of football, and within a few minutes Joe was smiling again.

Fiona took the opportunity to take me aside. It wasn't just Joe's temperature, pulse and blood pressure that they were worried about. Joe's blood test from the previous day had shown dangerously high levels of creatin and urea. This indicated that Joe was still seriously dehydrated. Fiona agreed with me that this was puzzling. Joe had three nights on a drip at the first hospital and for the last four days had been drinking plenty of fluid at The Great Barn, under tight supervision. My fears that Joe might have done permanent damage to his internal organs resurfaced. Fiona didn't say as much, but I was under the impression that she was worried too. It is highly unusual for a child to get dehydrated again so quickly. Another blood test was urgently needed, so poor Joe had to endure yet more needles. This did nothing to improve his general state of mind.

Thankfully our fears were unfounded. The blood tests were carried out in record time and showed that Joe was still dehydrated, but only mildly so. It was decided, much to Joe's relief, that he didn't need to have a drip overnight, but that he should stay in hospital for observation. Joe also had an ECG, which confirmed that his heart was beating normally, albeit a little slow.

The one positive sign that came out of this hospital stay was Joe's determination to stick to his re-feeding plan. At the appropriate times he would tell me it was time for his snack or next meal. Obviously we couldn't be as regimented in the portion sizes as they were at The Great Barn, but Joe had a very clear idea of how much he should be eating and drinking and it seemed to be a sensible amount to me. Joe was still petrified of getting fat, but he definitely wanted to beat this strange illness and get back to normality as quickly as possible.

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