Week Five - Reaching Out......

Somewhere along in here it occured to me that I am under too much stress. It also occured to me that I know next to nothing about dialysis in kids, and transplantation.  The information that the doctor sent us home with is woefully inadequate in my opinion, so I started looking for resources.

A friend recommended www.UNOS.gov, a website that keeps track of all hospitals that do all kinds of transplants, and also the distribution of transplantable organs.  It made me able to look up all the area hospitals (we are on the east coast).  Our local center told me they do 5 pediatric transplants per year.  UNOS says they do 2 or 3, but managed 5 in 1999.  Ummmm......really? I was surprised, actually, at how few transplants are done on kids even in the major centers.  I am thinking that a center about 3 1/2 hours from here might be our first choice.  But hey, we have until fall to think about THAT, right?

My husband and I figured that if we made some posters of our daughter's cute lil' face and put them here and there we might get lucky and get a donor, since preliminary tests show that our baby doesn't match any of us except her pregnant sister, who for obvious reasons is not a candidate for kidney donation. So we went to Kinko's, had posters made (they give you a better price if you tell them a sad story!) and began handing them out all over the place, including to all my older daughter's college grad families and friends. So far we know posters are from Niagara Falls to Connecticut to Florida.

I called the local branch of the National Kidney foundation.  They sent us a couple of cookbooks, a child-friendly guide to dialysis with pictures that are considerably less terrifying to look at than the adult version. BabyGirl was glad to get info she could understand, and even more excited to get mail in her own name. There are no local support groups for kids awaiting transplants.

I called my EAP (Employee's Assistance Program) and made an appointment with the same counselor I saw the year my older daughter decided that eating was optional.

Stress management?  I'm not sure it's possible, actually.  But we'll take a stab at it.

DeeDee