A detour through dialysis

Evelyn will be going to her third session of dialysis today. That's how fast her little life can change. It started on Wednesday when Evelyn and I went in to the hospital for her last iron infusion. We expected to be free to pick up her sisters at my friend Tarah's house by 10:30 and then come home and finish cleaning the house.  

Tubiefriends.com, a non-profit that makes Build-A-Bears with medical accessories.

As soon as the infusion nurse took her blood pressure (160/100, which is very high for a 2 year old who should be at 100/58) she called our nephrologist. Dr Flynn asked us to stop by the clinic when we were done with the infusion. Evelyn had been looking very puffy the past month. She also started grunting multiple times a minute (especially in the couple days leading up to our Wednesday infusion). 

Getting ready for the hemodialysis catheter placement

Both Keith and I were getting increasingly worried about her but were just hoping she could hold out for transplant. As soon as he examined Evelyn he looked at me with his best "brace yourself" look and in his characteristic matter-of-fact yet compassionate voice said, "Evelyn's being admitted and she needs to start dialysis." And that was that. There was no arguing when my child had started retaining water, so much water in fact that it had made its way into her lungs. There was no pounding my fist and saying "Well, can't you transplant Keith's kidney today?" Evelyn was in crisis and our wonderful medical team gave us the only good option.

My sweet sister who came and shared joy and comfort

So they were able to get her stabilized enough with the help of a diuretic (to start to help her body get rid of 4 pounds of water!!! FYI, she only weighs 27 pounds) and a third blood pressure medication. But this was only to move her from semi-emergency to "let's get this girl transplanted ASAP". Transplant still looks to be about 4 - 6 weeks away so in order to get her there we had to start dialysis. 

Evelyn's dialysis nurses, who fell in love with her.

Now for those of you who are unfamiliar with dialysis let me share my vast knowledge I've acquired in lo' these 24 hours. Essentially, you take your blood out, put it through a washing machine, and stick it back in. (Weird? Try having your two year old sit on your lap, coloring, and listen to the washing and watching her blood go in and out of tubes.) This process is all made possible by a magical hemodialysis catheter (sometimes called a Hickman, named after the doctor at Children's who pioneered it).

Simultaneous dialysis and blood transfusion--how efficient!

If any of you have followed our friends Sten and Jai Anderson's daughter Allistaire's journey (Jai's blog, Conglomeration of Joy, is quite remarkable and beautifully written) she just had her catheter out a few months ago.




We will be in dialysis 4 times a week (approximately 3 hours each session). Keith is at the hospital at this moment with Evelyn. I'm at home trying to remake our home. We are a little shell shocked--it took me three days to communicate an update. However, we feel upheld--by our God, by our family, by our medical team. This is a detour, which at first I sobbed at having to take. But now that Evelyn is feeling better I'm relieved.

Evelyn's roommate Bailey, who had her kidney out the day before this photo! Bailey asked Evelyn to go for a walk and they naturally held hands.