Life is wonderful and difficult... and I am grateful!

Friday, September 2, 2011

Tight Rope

We are walking the tight rope in the Noel house. Actually, I feel as though I am carrying Liz across it....

Tonight I received a call from one of the Infectious Disease doctors at UCLA. This doc is kind and patient and hangs onto each word I say....something I am learning must be a prerequisite for ID's because they all seem to have those in common.
Dr. N. was calling to update me on a few things.
First, the UCLA lab was unable to process ELizabeth's stool sample from Monday. Nothing like being told that on a Friday evening from 30 miles away. He did some research and thinks that Memorial can do the same "CDiff by DNA" test, so I will have that done on Monday, hopefully.
He also let me know that he has been "contacting other institutions" to find if any have done Fecal Transplants. This way, if it is determined that the transplant is the best option, we will have something in-place. UCLA is willing to do the transplant, but it would be the first choice to go with a team that has already performed one.
Liz has now been off of antibiotics for the CDiff for 10 days. So far, though she has cramping, pain and abnormal stools, she has not had bleeding. This is a huge thing I am clinging to, praying and hoping that her body is beginning to at least fight-off the toxin using her natural bacteria and flora in her gut. We are riding a fine line of watching and waiting. We want to give her body a chance to fight for itself; to show that her gut can restore itself and overtake the toxins...but waiting too long to act again (if needed) with either antibiotics or the transplant could put her right back to the stages of Colitis and hospitalization. SUCH a tight rope. As I looked in on her napping today, having just gotten off the phone with the doctor I had a feeling of "this is my job. I can take care of her better than anyone and it is my job to help her get well by following directions, asking questions and physically caring for her."

I am glad the Infectious Disease doc called because when asking how she was I reported that she is sick with a fever, sore throat, congestion and chest pain. He told me to stop her nasal spray immediately, as the steroid in it can alter the mucous lining in her nose, effecting any virus she may have. How in the world would I have known that?! Liz being sick is another tight rope...she cannot be on an antibiotic right now. The antibiotic used to treat the CDifficile is different than antibiotics we take for bronchitis, pneumonia, strep, etc... those antibiotics can give a person CDiff and for her, having CDiff now, it would be a nightmare for her to be on one. She has had all of those things in the past year, so we are praying this is just a common virus and stays simple and goes away quickly. Again, this is where her weakened immunity comes in. Such a cycle.
She feels pretty awful tonight and I am sad she has to have this on top of her CDiff symptoms. Hopefully she can rest this weekend and then feel well and strong for her first day of school next week.

No comments:

Post a Comment