One Year Ago Today: 01/19/2013 - Probably Need a Transplant

(01/19/2013, Saturday) Early this morning I met with one of Evie's nephrologists (kidney doctor) and conferenced Heather in via Skype. We talked through several of the issues (having the surgery for a peritoneal dialysis catheter, possibly placing an NG-Tube, etc), and we officially discussed kidney transplant for the first time. Wa-hoo.

Two hours later, the family came to visit today although without Evie's younger sister (who was well enough to stay at a friend's house, but certainly not germ-free enough that it would be worth it to risk having her near Evie.) Having the rest of the family visit did Evie a lot of good today. Evie also enjoyed (she ate!) the homemade food that mom brought (Stroganoff & Chocolate Peanut Butter Chip Cookies).

Before Evie became ill, she was 44 lbs. She was weighed minutes before she had her seizure the day she arrived here, 7 weeks ago Sunday afternoon, and weighed 40 lbs. I'd say Evie doesn't have much more weight to lose, even though she is heavier (41.4 lbs.) than she was when she checked in. This is because when she checked in, she was severely dehydrated, but not enough time had passed that muscle or bone loss could have played much of a factor. If Evie dips below 40 lbs now, it would most certainly be the result of muscle and bone loss, not dehydration.

My last post probably didn't make much sense because I tend to be writing when I'm overtired. I do think I pushed her too hard doing homework on Wednesday, and doing physical therapy things on Thursday. The whole eating thing is stressful, and while I had good intentions, the conversations she and I had on Thursday night and Friday morning did nothing to make it less hard, if anything, I did a brilliant job of traumatizing her, which left both of us in a bad place on Friday.

Every decision made regarding her care is difficult. We don't want Evie to be insulin dependent, so we don't give her the one thing that has helped her effusion shrink in the past (steroid). We don't want to hurt her kidneys (which according to the test have no significant chance of recovery) so we don't give her ibuprofen, which may or may not help with the effusion. They started giving her aspirin, because neither of the other options sounded good -- but oh, yeah, this is the girl who needed half of her blood swapped out in 24 hours, so thinning her blood doesn't quite seem brilliant, does it? So today they killed the Aspirin, and went back to Ibuprofen, but a lower dose. Is that wise? It depends on if you believe in miracles. If you think her kidneys still have a chance of recovering, it is a dumb move. I'd argue though that if you have the faith to ask for functioning kidneys, surely that can overcome a little Vitamin I.

Last but not least, I'll share a couple snapshots of Evie's journey thus far. The time lapse is almost exactly 8 years. She's 10 months old in the first photo, and 3 months shy of 9 in the second.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.