Massimo is still in PICU. On Thursday we were told that we could bring him home during the day if we wanted to. So he came home for a few happy hours and I took him back at 7.30 pm (yes, I missed the beginning of the match, J stayed at home to watch it!). I got him ready for bed and by the time I left at 8.20 pm he was fast asleep. Friday was a day when I was due to have respite and I had organised to go to the hairdressers and then to meet a friend for lunch. I therefore arranged with Annette that we would pick Massimo up from PICU together and then she would stay at home with him. Unfortunately he hadn’t slept well that night and he was very tired, so he actually slept nearly all the time he was with Annette, and as he was asleep his breathing was really not good at all. Annette ended up holding him on her lap and pushing his trachy in for nearly 3 hours on the trot. Her left arm went blue due to lack of blood flow and the fingers on her right hand had quite marked dents where she had been holding on to the trachy. She gave him to me just before he left and Massimo got agitated and a little blue. Luckily J was on hand as he is very calm and very good at positioning the trachy well. After Annette left, Massimo woke up and was bright and happy and gorgeous!
We took him back to PICU quite early and Saturday he was fast asleep all morning so we went to visit in the afternoon once he was awake. The same thing happened on Sunday. He doesn’t seem to be sleeping a full night and tends to have quite a long nap in the morning, so we planned to pick him up once he woke up in the afternoon afternoon. Also he had a couple of blue episodes both in the night and in the morning, so we know we are doing the right thing keeping him in at night. Although we had a lovely afternoon in the garden (before it chucked it down with rain) and he behaved well, with no blue episodes I decided that it would be safer and better if I didn’t bring him home on Monday as I wouldn’t have Justin’s support. This proved to be a very good decision as Massimo spiked a temperature and was very, very unwell on that day.
He didn’t want to be held as this limited his control over the position of his head and therefore his trachy and also it made him even hotter. He didn’t want to do anything except be left alone on CPAP and sleep. Eventually as the paracetamol and ibuprofen didn’t seem to be enough, we (Justin, the nurses, the consultant and I) decided to give him some chloral and keep him as calm and settled as possible. We were just ticking away the hours waiting for the bronchoscopy. Tuesday however, something had changed dramatically as he was bright as a button and back on just oxygen.
Other than that he has a very sore bottom and therefore is spending most of his time exposing his bits to the world, much to the amusement of the parents and visitors of other patients.