This morning, after a good night’s sleep, things were looking OK. Then Mum called to say that they were discharging her at 2 pm. Suddenly I needed to get to Boots to give them the prescription for Mum’s oxygen before they would deliver. Even after explaining that with a special needs child it was difficult to get the prescription to them so that they could deliver in time for Mum’s discharge, they wouldn’t budge. Luckily my brother stepped in and offered to go. However, before he even left Massimo decided to have a poo whilst feeding and got very, very distressed. He started looking a little grey and eventually after discussing it with Helen our community nurse we called an ambulance.
When the ambulance people arrived they walked in and said “hello, my he’s grown!” – yes they’ve taken us to St George’s before. The had the oxygen with them and I already had Massimo’s attachment ready. We plugged him in and walked to the ambulance and Massimo’s colour was already coming back. By the time we got to Rescussitation he was happy and kicking and smiling. We took him off the oxygen and his saturation levels were absolutely fine. Whilst we were there we did some general MOT stuff trachy dressing, hickman line dressing and gastrostomy dressing then waited for my brother to pick us up.
Once home, a little less than an hour later, Toio and Leanne were off again to pick Mum up. Then at around 6.15 pm they went out to meet a mate for supper prior to meeting Justin to go and see The Matrix Reloaded at the iMax cinema (all except Leanne). J came home and then went out again, and then disaster struck. Massimo got very upset pooing again although he didn’t go blue this time (and we have oxygen in the house now!) and he was very unsettled until gone 9 pm when Leanne came home and could help out.
Mum was as helpful as she could be, then at 9 pm just as Massimo fell asleep and Leanne arrived home she felt absolutely awful and sat down. Unfortunately this had the knock on effect of killing her appetite. By 9.30 Massimo woke up upset again but he is currently fast asleep on Leanne and looking very comfortable!
Justin and Toio are out enjoying a swift pint after the cinema and I am ready fall asleep … as soon as I have prepared all Massimo’s milk for tomorrow and drawn up all his drugs, given him the last feed and put him to bed.
Good night