I meant to get up very early this morning to catch up on the work I haven’t been able to do while on TPN training. But I was struggling to wake up at 7 o’clock when Isita needed my help to get to the commode. I was thinking of opening my laptop to answer some emails, when she called out in shocked surprise “Daddy! I think I’m doing a real poo!” As we peered at it, I almost cried and so did she. I won’t go into details, apart from to say there is still room for improvement. Nevertheless, a huge advance; she has not produced anything you could call a turd at all since early July.
As is so often the case, the feeling of elation was short lived. Soon afterwards she was being sick and suffering from sharp stomach pains which made us think the end of her NJ tube might have once again become displaced. It hadn’t, as an x-ray showed this afternoon. More good news.
It feels like we are making great progress in all areas. Isita zooms down the corridors on her scooter rather than asking for the wheelchair. She is starting to swallow rather than spit out saliva into a bowl. She was not sick yesterday at all, nor three days ago – also a first in many, many months.
Marta and I are in no doubt that we owe these advances to the new Nourish feed we have imported from the US, on the recommendation of my friend Glada. This morning we told the hospital we were no longer going to give Isita the old Neocate feed.
This upset the dieticians. One came to explain how dreadfully risky it was, as none of our nurses or specialists have been trained in using Nourish, nor the new pump that we are bringing in. As we live in an Abbott area, It would be better to only use products supplied by that company, he said. Unfortunately, Isita does not have an Abbott tummy.
Meanwhile, the TPN training is going brilliantly. Yesterday, I changed Isita’s dressing myself. We expect to be looking after her at home by Monday 22 January Marta’s birthday. And about time too. Last night was her 250th consecutive night at GOSH. She can’t have spent more than a dozen or so nights at home since this all started.