Here we go again!

Today should have been the start of the cross country season and I was looking forward to our first team league race and hoping to spend yesterday evening sorting my kit and changing my spikes from 12 to 9mm ones, bake some muffins for the girls after the race etc...

Instead, William, once again did his speciality of well to ill in life threatening measures in 0-60 seconds! It was all very stressful. The ambulance service and A and E were incredibly busy and William was not given the right code from the offset. He needed to be foot down and into resus but it took ages to get an ambulance for him (Hope and Ellie had been picked up and gone before it arrived!) and, when it did, Paul beat it to the hospital! We arrived to find no room in rescus and no doctor immediately able to see him. The triage nurse was not a paediatric nurse and thought TPN was a gastrostomy feed (which is not uncommon and forgivable as it is pretty specialised). She kept thinking his infection was on his gastrostomy site - which would not have been so worrying. Maybe the ambulance crew misunderstood too, hence their dithering. When she eventually did his obs, his temp was above 40 degrees and his heart rate 167! He was losing consciousness and his lips were white. It was very scary. The doctor came, A and E doctor, not a paediatrician and, understandably, wanted William's whole history. I just wanted to see someone who knew him and would see how ill he was. When the paeds reg appeared, and was someone who knows him - thank the Lord - she could see at once how ill William was and was furious that she had not been called down before and that the ambulance had not called in to get her down waiting. She had him up on the ward within 15 minutes so we could take bloods and start the antibiotics in a more controlled environment. I have never seen A and E in such a state of carnage. It was frightening when William was so ill.

It was 2 am before I got to bed in the hospital after we being confident William was picking up enough to leave him to get the things we needed for the night , have something to eat (I had just made a yummy chilli for tea when all this happened). Paul had a stint at the hospital this afternoon and I came home to sort out the girls, see Mum and Dad and to tidy and clean the house. The local hospital is close enough to come home for a couple of hours when William has gone to sleep. We usually get into such a mess after some frantic packing and coming and going of stuff each day. It makes such a difference to come home and relax in a clean and tidy house. I now have some yummy smelling apple, spice and walnut muffins in the oven. A huge contrast to yesterday evening!

William has picked up really well today. The tests have confirmed that he does have a line infection and he is responding well to the antibiotics. His medical examinations have revealed a heart murmur though. This is a new thing and we are not sure at the moment if it is anything to worry about or not. He is due to be seeing his local consultant on Thursday and so, while he is in hospital, they will do an ECG and heart echo. One concern is that he had a nasty fungal/yeast infection in his line in August. There is always a risk of spores getting into the heart valves. There is also a chance that line infections have caused inflammation in the heart valves. It may be a feature of his syndrome or a neurological issue and, of course, it could just be an innocent murmur. We will soon find out and, in the meantime, we have learned not to worry too much about things to do with Wills until we know we have to.