Today we learnt how to set up the home dialysis machine and how to plug in the bags. There are two, as Jasmine is only small and on the weakest dialysis fluid, one which drains fluid from her peritoneum and one which contains the new fluid which goes into Jasmine. There is a cassette which contains the tubes which you connect the bags and Jasmine to, and this also contains an area where the fluid in and out passes through so that the machine can calculate how much fluid to put in and how much fluid is drained from Jasmine.
Just learning this first step has made me feel much better as I was having a bit of a wobbly day today and got quite upset when one of the nurses suggested incorrectly that Jasmine might have to have a gastrostomy (she doesn’t, as this would involve piercing the peritoneum).
Later, when we were getting ready to take Jasmine downstairs to the cafe her nephrostomy sprung another leak and then she wouldn’t settle and we couldn’t take her down in case the urologists wanted to look at her. At this point we discovered that Jasmine’s dummy had disappeared so we couldn’t give her anything to suck on so that she could go off to sleep. I became very upset. Neil took over calming Jasmine down and sent me off for a break. He was then stuck there with a screaming baby.
It is the small things like dummys or someone being insensitive, even when you know they are, which are upsetting. These are the things that really make you think that you are not going to make it through the day. Things that really help are learning how to do take blood pressures and setting up machines and getting on with getting on so that you don’t have time to get fixated on the small stuff.