One of the things you'll often hear parents of medically fragile children saying is, "I can't wait for the summer and for the winter bugs to end!" When you have a child who's vulnerable to respiratory infections every winter feels like another challenge to be survived, so it's always a relief to get to the summer months in anticipation of a run of good health.
This summer William had other ideas! Since June he's had episodes of unexplained fever and episodes of slower absorption in his digestive system. We've been to and fro from Holly ward and had blood tests and X-rays but not really found anything concrete. We wondered whether there had been degeneration in William's brain causing his internal temperature control system to malfunction more giving him false fevers, but we were also seeing small increases in his infection markers which complicated the picture.
Mid-August William had a particularly severe fever episode which he reacted badly to. We woke at 5am and could hear his breathing wasn't good. By 7am we had an ambulance out as the fever was causing back to back seizures and vomiting, which are never a good combination! Trying to protect his airway from aspirating vomit during seizures is not fun. However once we got to hospital and the meds had kicked in he quickly stabilised and went back to normal as if nothing had ever happened! We were even more puzzled about what was going on.
Then, of course, on the day we were meant to go on holiday a few weeks ago, it all came to a head! William's gut decided to stop and not absorb his breakfast which, when you're a Type 1 diabetic having had your insulin creates problems. We had to deal with his most severe hypo yet and then take a trip up to Holly ward because his tummy was firm and swollen. Following multiple x-rays, a transfer to Addenbrookes for a surgical review, IV fluids and gut rest, it was decided that William had an infection somewhere in his body that had caused a septic ileus. He was started on IV antibiotics to treat the infection. Meanwhile all our family had headed off to Kent on holiday with Eliza to make the most of our holiday home.
By the Sunday evening William was tolerating some milk feeds into his tummy again so after much discussion with the Drs we decided to transfer him onto oral antibiotics and head off to Kent on Monday morning. We'd researched the local hospital to where we were going so were prepared. It has always been a priority of ours to have holidays with William and to try and enjoy family days out, so although William wasn't fully recovered we took the difficult decision to go.
We arrived in Kent on Monday afternoon and were really pleased to be there. Unfortunately though by Tuesday the strong antibiotics William was on began to take their toll and he had horrendous diarrhoea. He then caught a cold from Cecily which she'd picked up at the hospitals. Between the cold and poop he was not in a good way, we couldn't get him off his bed, never mind take him out, so Steve and I took it in turns to stay in with him. It was not how we'd anticipated our long awaited holiday panning out.
By the time we went home at the end of the week William was slightly better so we managed to stop off at the seaside on the way home for his only outing of the holiday.
It was a pretty horrendous week! I'm not sure how we kept William out of hospital! But we somehow managed to squeeze in some good bits as you can see from the photos.
Once back home we followed up with our consultant who was concerned about the level of diarrhoea William was experiencing so decided to test him for C-diff, a really nasty tummy bug that can be triggered by antibiotics. Thankfully the results came back clear a few days later but rather unexpectedly the tests discovered William had a parasitic infection instead called Cryptosporidium. This is a relatively rare infection usually picked up from contaminated water sources so where William had got it from was a total mystery! It's a reportable illness so we had to inform environmental health about the circumstances around William and how he could have caught it.
It's taken William a month to fully recover. He wouldn't absorb his usual food for a few weeks but thankfully we have now got him back onto his normal diet. He wasn't allowed to return to school until last week and we had to miss out on our respite at the hospice because of infection control. To add to the fun, Steve caught the Crypto from William! It's a particularly hardy parasite, resistant to bleach, so we had to go serious on our infection control to ensure no one else in the family caught it.
It's been a crazy few weeks! We were absolutely gutted to have lost our holiday but such is life with a poorly child. Disappointment becomes second nature and you just have to make the most out of it.
We are hoping that the fevers he'd been experiencing since June could be part of the crypto infection but no one knows for sure if it is possible for it have 'rumbled' along for that amount of time. We are now just watching and waiting to see if these fevers continue. William was due to have a surgery last year but due to his poor health it was cancelled several times. We have now made the decision to not go ahead with the operation. Obviously it is difficult to accept that William is becoming more unstable but we are glad to not have to worry of surgery on the horizon.
We're glad to be back in the flow of normal everyday life, something you don't take for granted when you're used to interruptions of hospital stays and illness.
