Well, what a week it has been! Sorry for the silence but the time has been full and the plans have changed so many times I wanted to wait until I had something concrete to write.
So Saturday night was awful after a painful day and there was talk of emergency surgery at mdnight. Following tests/xrays on Sunday, they stopped all feeds into his gut and put his J and G tube on drainage (nothing going in + everthing draining out = less pressure on his tum). This meant that Sam was much happier and clinically well so a rush surgery wasnt needed. He had 4 different bags of fluid going into him to cover his nutrition and fluid needs.
Monday we went to radiology for rectal barium studies - generally unpleasant as the name suggests.
Tuesday and Wed are a bit of a blur of nothingness, waiting for feedback from the dye study and just hanging with Sam. Wed i did escape and see the girls after school and have dinner at home with Francis and the girls, before heading back in for the night.
Thursday - today. Surgical popped in, then gastro came in. Both have similar ideas of where we are heading but different routes to get there. Basically everyone is happy that the surgery has gone well - it has healed well and there doesnt seem to be any leakage into his torso cavity. They are also happy that the colon is working, albeit sluggishly - sam is soiling between 2 and 4 nappies a day, so this shows that stuff is going through. They think that a part of the bowel is very narrow which is causing a bottleneck, which he why he blew up and was vomitting after 2 days of being fed milk into his gut. They are hopeful that with time and use, this piece of bowel could stretch and function much better. Tentatively the plan is to give Sam an easy few days over the weekend where nothing is changed. He will have 4 hrs off pumps in the middle of the day when he can run around etc - this too is important for gut motility.
On Monday the next bit of the plan will be revealed, but if Sam remains stable over the weekend we may transfer up two floors to 26b and be under gastro. Gastro would like us to stay in until we have a little milk going in to him. This will be a slow process but a vital one, as TPN is hard on the liver. The other option is that I could take him home for a couple of weeks on total TPN doing gastro aspirites and maintaining fluid replacements, which they are happy to train me in. In one respect it would be great to just get home, but I am conscious that our home not become a hospital and be a haven for the girls. I guess I am mentally tired after 2.5 weeks of holding my son down for procedures and daily finger pricks, that I just want to be his Mum at home. I know I could learn fluid replacements etc and that there are community nurses that can visit daily, but for today it all seems too much for me to cope with and I want my home to stay our home... I also want Sam to love being at home.
So it could be a long stay ahead, but that's okay. We are very much a strong team - I am so glad that Francis will be here in the weekend and continues to give me a break when he can. We are tag parenting with a very generous showering of practical love from many friends - dinner dropped in last night (homemade butter chicken and banana pizza - amazing!), surrogate netball mum (KC), beds and school lunches for our girls (team Cairns - thanks Em and Isaac for sharing your parents for a bit and to the fun crazy Brits who Jas is mesmerised by your wharf jumping exploits - THANKS). Plus prayers and cares of many......
Slow and steady.....patiently waiting and trusting and hoping for great things.
You can tell we have been in here too long when Sam is singing all the theme tunes of anything ever made by Disney. He also watches tv and then announces that he wants to do whatever it is he has seen, eg , 'I want to go for a ride on a train tomorrow', or 'when I get home i will play hide'n'seek'. Tonight he announed ,'I'm going to be a princess one day', a glance st the tv sees Thomas the tank engine has changed to Sophie the princess!
From me and Sam the sleeping princess, goodnight! X