We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.
Tuesday, October 22, 2013
Hanging in there. day 5
I arrived at the hospital to find Alice sleeping. Lisy said Alice did not sleep well last night because of how uncomfortable she was. Her blood pressure had been high all day. However, at the moment Natalie, Evie and I walked into the room her pressure went down. Our nurse said it seems to happen quite frequently and wasn't surprised to see Alice relax more when she knew her sisters were there. Once Lisy and the girls left Alice became sick and threw up a healthy amount of blood that had been collecting in her stomach. Much of the blood drains from the open sores in her throat into her tummy until it needs to get rid of it. Once she had finished up with that episode I took the opportunity to do her mouth care. It was a struggle, but we got it done. Most of the days now until her new marrow takes will be like the time lapse video below. She will sleep and wretch. I keep telling myself; for her, that soon enough this chapter will have an end and she will look back on this time as one she can use as a tool to better herself and others.
p.s. Lisy added a post from day 4, which we missed.
A few hours of the day outside our window
She sleeps a lot now. When she is not sleeping she keeps the pink bucket close by.