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What can we say, our girl is unique…

February 22, 2011

We found out the specific bacteria Lucy has growing in her line, it’s a weird one, one she grew out a few weeks ago but we seriously thought it was a contaminant as our doc and none of the other docs on his team have ever seen it before.  Dr. R came in late this morning and asked Lucy for all of her lotions and potions that she loves to smell, he was kind of on a wild goose chase of sorts, reading all of the ingredients in her various lip glosses and hand sanitizers.   The bacteria that Lucy grew can be a by product of a chemical that they use in the manufacture of cosmetics, it is also a bacteria found in sauerkraut.  Like I said, it’s weird.  What we didn’t know this morning is that the bacteria is not considered part of our normal flora but can been found in gastric fluid and our gastrointestinal systems.  After doing some research and discussing this very strange yet interesting finding out with the infectious disease doc, we learned that the bacteria is indeed a bowel bacteria, but it is not a good bowel bacteria.  The reason that Lucy is growing this bacteria in her line is because her bowel walls are deteriorating, leaching this bacteria into her blood system, which is causing her infections.  One of the surprising things about this bacteria is that it is resistant to Vancomycin, the broad spectrum antibiotic we use to treat gram positive infections.  Dr. R switched Lucy to ampicillin every four hours to treat the bacteria. Yikes, there goes any hope of getting a good nights sleep for the next two weeks!  Knowing how much I enjoy researching all there is to know about Lucy’s issues, Dr. R brought me an interesting case study to read about patients with short bowel syndrome who had the same infection as Lucy has.  Although Lucy is not diagnosed with short bowel syndrome, Dr. R describes her to be very similar to a patient with short bowel syndrome.  What has us all scarred, how are we going to control the spread of bacteria into her blood system as it is apparent that her GI system is failing?  This unknown, leaves me feeling queasy.

Due to the uniqueness of the bacteria, the fact that we have grown the same bug twice in the last month, and the fact that Lucy’s line has been repaired three times also in the last month, we are going to be pulling and replacing Lucy’s central line.  Our need for more access is here, so we are going to be putting in a double lumen Broviac line vs. the single lumen Broviac line that she has currently.  We are an add on for tomorrows surgery schedule, which means we may or may not get a time tomorrow,  we’ll just have to wait and see what tomorrow brings. 

We are still on isolation because Lucy is positive for c-diff.  Umm, yes, we are going a little crazy staring at the same four walls, but on the positive we do have a nice view out of our window.  Dr.R is not sure we will ever be able to get rid of the c-diff since Lucy really has no good bacteria in her GI tract and her need for continual antibiotics is just that, a need.  We are working on a plan to keep Lucy on a regimen of various antibiotics to keep the bugs at bay and hopefully keep the c-diff to a minimum. 

My parents and the kids came by this afternoon to see us, and Drew came this morning and then again this evening.  I miss being all together as a family, if I think about it too much I get so homesick it makes it worse, not better.  I am so grateful for the time I do get to spend with Lucy.  Her birthday is coming up soon, so she and I have been talking about all the things that she wants to do for her birthday.  Umm, does anyone know how we can bring the circus, Disney World, and a fourth of July fireworks show to our home on March 12th, as that is what she wants for her birthday? 

We have had some wonderful visitors the past couple of days and we want to thank you for taking the time to be with us, we loved spending time with you.  It made our very long days here seem shorter.  We also want to thank you for your thoughts and prayers, love and support, like I said yesterday we really couldn’t do this alone.  

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