Positive

The word positive has been used much in our lives lately.... Liz tests positive for cdiff, her stool tests positive for blood, I am positively indecisive : ).

Well, I made a decision. Elizabeth's Miller Children's Infectious Disease docs advised and prescribed a new drug for her to start on Wednesday. My gut told me to not have her start it....at least not yet. On Thursday she saw her GI doctor because she has been having more stomach pain, different than it has been with the infection, and retching. His opinion is that she should not start the new antibiotic until we see the UCLA Infectious Disease team on Monday. So, with that confirming my gut-feeling, we are holding off. I hope it is the right decision. Last night and this morning have been pretty rough for her and I pray it is not her body reacting to being off all antibiotics for now 5 days.

As for the increased pain and retching, those symptoms and her examination lead the GI doc to think something is wrong with her Fundo. (short for fundoplication- the surgical "knot" she has where her stomach and esophagus are tied together, purposely done to keep her awful reflux under control). The Fundo has been re-done 4 times and though it helps her, has been nothing but trouble. We know she has the para-esophageal hernia (also has been surgically repaired over and over) and when that bulges (or "herniates"), her stomach slips into the chest cavity. Since her stomach and esophagus are tied together, you can see how that would cause problems and awful pain. Anyway, this is totally separate from anything having to do with the CDifficile. She's starting on yet another medication to help with spasm, as we all don't want to put her through any other scopes or procedures right now.

I hate this all and I don't feel bad for saying so. I am lucky to have caring people in my life, and even a few friends who have kids who require a little extra medical care and can understand exactly how I am feeling.
I think most people know that though I hate all of what Liz has to go through, I am grateful for all of the ways- and there are MANY- in which she is wonderfully healthy.

I hadn't been to the hospital to mentor in weeks because it was just too much considering all we've been dealing with. I got a call from a social worker who told me that a family I have been working with was inpatient again and asking for me. So, Tuesday I went back.....and all I kept thinking was "we cannot come back to this place for an inpatient stay". We just can't; I don't want to. As I walked down one hallway I saw a sign on a door that I didn't recognize. It wasn't an isolation instruction sign or an npo sign. As I got close I saw that it read "Do NOT enter unless you have a POSITIVE attitude!" It was just what I needed to see at the time. I wish I had gone in and met the parent who wrote it and told them how lucky their child is to have such a wonderful advocate.

It can be difficult sometimes to be positive. It is easier for me to be grateful than it is to be positive. It is easier for me to be in denial than it is to be positive. It is easier to put on a smile and say all is well, than it is to be positive. Or maybe, when the going gets super tough, denial, gratefulness and a smile is being positive. In any case, I won't forget seeing the sign on that baby's door....and when Liz is inpatient again. NO, if she is ever inpatient again, we will hang the same sign.
I will update after UCLA Monday.