Details…

We had a relatively uneventful night, which was just fine with me after the day that we had.  Dr. R came in this morning and talked to me about the bugs growing in Lucy’s line.  What we saw happen to Lucy yesterday was gram negative sepsis, very scary!  When we started pushing antibiotics through her line it caused the bacteria in the line to spread throughout her blood system, thus causing Lucy to become septic. He referred to gram negative rods as “the bad guys”, gram negatives are bowel bacteria.   Dr. R believes that the bacteria translocated from Lucy’s bowels into her bloodstream.  This is what we have been afraid of, Lucy’s bowels are failing, despite all of our efforts to push trophic feeds and control her small bowel bacterial overgrowth (SBBO).  We are waiting for the susceptibilities to come back so that we know more precisely what type of gram negative bacteria we are dealing with.

Lucy’s urine has also come back positive with gram negative bacteria.  The good news is that the IV antibiotics that she is on should take care of both the bacteria in her line and urine.  What has us concerned is the fact that Lucy’s white cell count is only minimally elevated.  Lucy’s immune system is so compromised that it is not responding appropriately to the bacteria in her system.

We took a trip over to the sleep lab this morning to have an EEG done of Lucy’s brain.  Yesterday’s seizure activity, tonic clonic seizures, was a different type of seizure than what Lucy typically experiences, absence or petit mal seizures.  We believe that yesterdays seizures were brought on as a result of Lucy’s high fever.  Nonetheless, an EEG was merited considering the severity of what happened yesterday, her having mito, and the regressions that Lucy has experienced this year. 

Now that we know that Lucy has a line infection, we need to get rid of the bacteria from the line.  We need to have two negative cultures in a row to even consider keeping or replacing the line.  Dr. R is going to do everything he can to save the line.   He is fearful of having to replace it, he feels that if we do this with every line infection we are going to run out of access, places to place the lines.  He admitted to me that running out of access is one of his big fears for Lucy, mine too.  I also have to admit that I am fearful of keeping this line, it is subpar now that it has been repaired once, he knows this too.  Also our need for a double lumen (two ports of access) is here, as we are running IV infusions several times a day in addition to TPN twenty-four hours a day.  We will decide on Friday what the plan will be.

As for today, it is snowing and the kids are at home with Drew because of the snow.  My mom was on her way to our house this morning, but all flights have been canceled until tomorrow..ugh.  Lucy and I are keeping warm here in her at the hotel DuPont.