Bad day in the office...

...for our poor respite nurse yesterday. We have recently found a lovely nurse from an agency to come a day a week so I can get out and have work meetings etc. Things had been going really well and William had behaved himself when she was here...until yesterday, on the hottest, closest and most environmentally stressful day of the year! His pump was alarming and occluding. This is all well and good on a ward when you can solve the problem together but she was faced with a misbehaving pump she knew nothing about. She called our community nurses who came and put two heads together and all was well...until William did a super nappy that spilt out all over his play pen mat! An hour or so later, the pump battery broke. This has never happened before and we just change the battery pack once a day so I hadn't shown her how to change them. So, William's TPN had to come to an early stop. Luckily, I was able to put it up early and add the volume missed so he didn't miss out on fluid on such a hot day. I popped back in on the way to pick up the girls from school as the community nurse had called to say she was at the house to flush his lines and the batteries seemed not to be able to plug into the pump. We solved the problem and I rushed for the girls. As soon as I left, William tripped up and cried himself into one of his "blue tinted moments"...something the nurse had not yet seen! All in all, not the best day in the office for the poor girl! I only hope we haven't scared her away because she is so good with him.

So, today there were many calls about salvaging the situation and sorting out some pump training etc for her so I think all will be well. There were also many calls about William's "blue tinted moments". He always recovers from them and we have got used to them but, as in his drunken tippy toe walking, once mentioned it becomes a bit more real. He is having an overnight saturation recorinding on Friday night, for the first time since coming off oxygen, just to make sure all is OK. We will also do some spot checks when he is running around. Hopefully, this is something and nothing. It would be so gutting to have him back on oxygen as that was such a positive result of the Nissens (reflux operation). Of course, it could be that the Nissens is getting loose and he is having silent reflux into his lungs again. Who knows...we'll see what the saturations are like and he will see our local consulant on Tuesday for a general review.