We have been home non-stop since July 18th, and by my reckoning that is a full 44 days at home (or 6.25 weeks), an absolute marathon! Unfortunately we broke the trend this morning as we ended up going to A&E by ambulance.
Massimo has had a really sore bottom since last Tuesday and it has been getting worse and worse ever since. We aren’t sure why he has had this nappy rash and although the idea that it might be linked to possible teething is a current favourite there is little evidence of this in his gums!
Anyway, yesterday every time we changed his nappy there was a major crying fit with quite a lot of loss of colour in his face, sometimes (often) with a tinge of grey or blue, but a good cuddle later, his colour would return to normal and the crying would settle. Overnight Verna our respite nurse was looking after Massimo and his saturation levels were in the low 90s (as opposed to his usual 97-100%). By this morning they started dropping under 90 and then picking up again. Unfortunately a nappy change was then required and he went really blue and did not seem to be picking up again.
Massimo was due to go to Great Ormond Street today for chemo and for the final stage of his gastrostomy (where the temporary tube is removed and a little button replaces it). Instead when his colour wasn’t returning I ended up calling 999 and rushing into St George’s Hospital. The ambulance rapid response unit was here in about 5 minutes and the ambulance followed shortly after. Massimo was put on oxygen immediately and soon started to get some colour back in his cheeks. By the time we got to the hospital he was looking much better and smiled round at all the doctors and nurses when I put him down on the resuscitation trolley!
A couple of (boring) hours later we were admitted to Freddie Hewitt and when the doctor came round she was really quite pleased with how he was and assuming that he is not still on oxygen tomorrow we are hoping to be coming home. Life with Massimo is anything but dull!