Dialysis

I've been meaning to do this for a while, but I keep forgetting.

A good friend of mine, S, has a daughter K who is on dialysis three times a week. She has almost no kidney function left and so her blood must be cleaned by a machine, always. She can't do it herself. I've posted a few things about Maisie's experiences with dialysis over the past few months, and a few weeks ago I got a call from S, who was outraged to hear how different Maisie's experiences with dialysis are from K's. I explained to her what I'm going to explain now, for all of you who have experience with dialysis and know how difficult it can be.

First of all, Maisie has 70% function in her kidneys (basically she can filter our 70% of the gunk in her blood on her own, while most people can filter out 100% of the gunk). Her kidneys can clean her blood on their own without help, but they are weak. They are easily exhausted. Sometimes when she gets sick she can't get better because her blood is not as clean as it should be. Whenever she is in the hospital long-term for some other reason, she is also on dialysis a lot.  Most kids with kidney failure go in three times a week for three to four hours. There have been stretches of time where we have done this with Maisie for various reasons, but it is exhausting. It's strenuous on the child and the family. I have heard S's horror stories and am filled with awe for those moms who take their child to the hospital for nine hours or more EVERY SINGLE WEEK. These kids have tubing in their arms constantly. They can't take showers or swim. Changing the bandage is a nightmare because the environment must be completely sterile. Without dialysis, these children will die.

This is not the case with Maisie. She is in a unique situation where she is capable of cleaning her own blood, but it is unusually taxing for her. Whenever her body is compromised by illness or something else, it is often helpful for her to be on dialysis for 24 hours. We find that a full day of cleaning once in a while works better for her and for our family than coming in every week did. It was too much pain for Maisie when she could survive pretty well without it.

I also know that most hospitals don't have enough dialysis machines to allow one child to use it for twenty-four hours periods. I'm sorry for that. The only thing I can say about that is we go to a small, private hospital with enough machines to allow Maisie one for twenty-four hours. It's that simple. If she were taking it away from a child who needed to survive, I would never allow her to use it for so long. Rest assured that I have checked many times that no one else needs her machine more urgently. And several times the machine has been taken away because someone else needs it. And that's fine. They need it more.