Finish line

My goodness, there is nothing like the ocean. Calm and serene...thunderous and crashing-in, all at the same time. Kind of like life. We always look forward to our annual week at the beach house. This year though, we were especially excited for August. Liz and I have kept our eye on this week as though it is a finish line. I have been telling her (and myself) for the past 4 months to just do what the doctors told her to do to get well, no matter how awful, because then she would be well and we would have a wonderful week on the beach.




My beach babes....







My poor Elizabeth Claire. After 4 months of this infection, she has had enough of feeling poorly. She is supposed to be on her last week of the antibiotic (Vancomycin), taking the medication every-other-day as part of a tapering dose technique. Last week was once a day, the week prior was twice a day.....all part of tapering instead of stopping the Vanco altogether 3 weeks ago as scheduled. Given that she has had 3 courses of the antibiotic over the last 4 months and it didn't clear out the infection, the Infectious Diseases doctor decided to try this tapering system, hoping it would finally rid the infection. Sadly, it hasn't. I noticed a week ago that her symptoms were returning and by Friday, she started with the diarrhea, soiling and bleeding again. She is beyond exhausted; needing to sit often and taking 3 hour naps. Gosh, she is going to kill me when she's older and reads this! Anyway, we are in a difficult place right now. The other drug options have not been tested on children. Before, the doctors felt that the risk of using Vancomycin for so many months (it isn't good to be on Vanco. for so long) outweighed the risk of using one of the untested drugs. Now, though, we are at a place where the risk of using an untested drug outweighs the risk of the toxin and infection continuing to cause her to have the symptoms and colitis.
So, yesterday the GI doctor and Infectious Disease doctor agreed that she should immediately start increasing the dose of the Vancomycin, again, while they figure out what to do. The Infectious Disease team will meet tomorrow to discuss what the next step should be. Last night the nurse called and said Liz needs labs done, so instead of taking her back to LB, we'll go to a San Diego hospital to do that. Her doctors know we missed our trip to Maine, on their orders, and totally want her to have a vacation. One doctor told me yesterday to try not to worry about what will come next for her and just enjoy the week here.
She is pretty angry with me, as I am the one she vocalizes her frustration to. She hates feeling sick, she hates me asking her questions about her symptoms,she hates the "dumb" doctors and she even hates me! Not really, I know, but it is how she is feeling. Last night, though, she was feeling awful and couldn't sleep. I sat up with her, rocking her like a baby, until 1:00am. It was wonderful to be alone with her in the quiet of night, talking in whispers and listening to the waves crash below us.
This will pass, eventually. She can't be like this forever for goodness sake. So, I'll just keep encouraging her and we'll keep our eye on the finish line of this horrible, yucky infection.