When we first got home from hospital with Jasmine, dialysis seemed to take all day. It was overwhelming.
As time has gone on and we have gotten more confident and it has become part of our routine, dialysis takes about an hour or so a day when you add up everything you do.
We have to do it in three parts: disconnecting on a morning followed by observations, setting up the machine whenever during the day, and connecting on an evening following observations. Then on alternate days we clean Jasmine’s exit site and change the dressing. Once a week we give her an epotein injection with a thin needle. If she was over three years old, she could have an epo-pen but since she isn’t, we use a needle and inject her subcutaneously.
Today, I was on duty and I had to set up the machine, clean the exit site, and inject Jasmine. It was 10.07am when I began my first one-minute handwash and at 10.52am I had finished everything and was just picking up the packaging. We were trained to throw everything on the floor as we go along so that we are not tempted to touch any of the ‘dirty’ packaging with our scrubbed clean hands. I was amazed and will probably never do it as fast and well as that again so thought I would write it down here to remember. The dressing looked really neat too.
Some days it is not like that at all and everything seems much bigger and scarier than normal. I will touch the wall by accident so that a three minute handwash takes six minutes or the dressing won’t be all lined up nicely and then I fret that I might have touched Jasmine’s skin by accident or something (not that I will have because you know when you touch something you shouldn’t). The other week the machine just didn’t look right. The bags had a funny patch on one of them and I touched the patient line by accident, and in the end, I just threw the whole thing away and started again, as I knew I wouldn’t have slept that night for worrying about infections. It was the first time I have had to throw away the bags and cartridge off a machine which is ready for the night in the whole time we have done dialysis. I felt weary at the thought of a load of new hand washes and repeating the set up but it was the right thing to do. With the experience that I have now of doing dialysis, my one rule is do everything as best you can so that when you get into bed you can stop worrying long enough to go to sleep as you know you couldn’t have done anymore.
the constant fear is dizzying! Take comfort in that you are doing everything humanly possible for your baby girl! You’re amazing and you will get through this!!!!! Sending hugs and wishes for easier days ahead! Thinking of you always! Jill