Friday night Sam had a terrible night - waking and vomiting 10 times with about 388 mls of vomit...Sat we were due to come home if he had a good night Friday. Well Friday was the first night back on his concentrated milk feed. After talking with the consultant it was agreed we could head home on a standard milk feed, his TPN had been ordered for home and it will all be reviewed on Monday - tomorrow.
So we got home around 2pm yesterday and settled back into life here. Last night I put him on 75% standard feed and diluted it with some pedialyte, as I wanted him and I to get some sleep. He had an ok night with only 4 wakings/vomits with a much reduced output. Yesterday he was sneezing a lot.... today he is the proud owner of a snotty runny nose, so we've had a quiet day at home. The weather is amazing today and I gave the girls the option of being with friends and swimming/playing but they were like, 'no, we are tired of always being in different homes, we just want to be in our home'. So they are over the busyness that hospital brings and we've had a lazy day watching DVDs, reading and doing what would be great on a wet miserable day...but I figured they needed a break and I wanted to let them to have the choice today.
The gastro consult said that it can take atleast a month for the gut to recover from a major gastro bug like Sam had and he doubted that concentrated milk would be something he could tolerate for a while. So our hopes of a TPN free night are fast becoming a longer term plan as I'm guessing his TPN will have to go up again in order to compensate for the less calories he is getting now from his enteral feeds. It is disappointing, but in a way all this vomiting for the past months has meant that maybe we've been making false progress. The odd thing is that even with the miserable nights/vomits Sam is still putting on weight, so that is why it's been felt that we could continue increasing feeds. Anyway we have to work with what we have today and what we have is a boy recovering from a nasty bug who can't tolerate the feeds he once did, so we have to run with that.
This last admission we were in the room right at the end of a very long corridor....a couple of parents were overheard saying that Sam should always be in the middle of the ward, as it's such a long way to walk to get their dose of smiles and cheekyness....and if he's in the middle of the ward the whole ward would be happier as they could all see him and cheer up. Was very cute and it's heart warming that Sam is well loved on the ward but it is reciprocated as you build friendships with the other parents and kids - some who have been in their for literally months and years.