Yes, she did…Lucy tested positive for c-diff. I admit I was a little surprised and disappointed to learn this, but considering the amount of antibiotics she has been on in just the last month and her recent hospitalizations I really shouldn’t be. As a result of this we are in isolation, we can’t leave our room but we can have visitors (hint hint), they will retest her again on Monday…UGH! Lucy’s line culture from yesterday was positive again for the same gram positive bugs she grew on day one. The susceptibilities are not back so we don’t know exactly what type of gram positive bacteria it is, Dr. R suspects that it is a bowel bacteria. We need to have two negative cultures in a row to consider our options.
IV team repaired Lucy’s line yesterday afternoon with some very stinky super glue and rubber tubing. The first attempt at this did not hold, so last night a second attempt was made to repair her line. For those of you counting, this makes three repairs on a line the size of angel hair pasta in the last month! Saying that we are a little nervous about the integrity of Lucy’s life line would be a huge understatement! I know access is a major concern but in my opinion this line has got to go! I know this is a conversation that we will be having with Dr. R on Monday.
We stopped all enteral feeds on Wednesday due to increased belly pain, and because there is some concern that Lucy’s j-tube is migrating out of position…again. One of the residents came in to tell me the “bad”news yesterday and then proceeded to explain to me what the scan looked like and all… blah…blah…blah. I was in kind of a mood yesterday, so I just let the the resident talk to me like this was novel. When she was done I agreed to a dye study, I think in part because we could get out of our room for a bit, but then proceeded to tell her that if we waited another day or so there would be no need for a study as we can conduct our own study when we push her meds into her j and watch and see if they come pouring out into her bile bag, you know like the last seven times this has happened.
Helen came last night and visited with our girly so that I could take a break and have a change of scenery. Drew came over after work and we were able to get a bite to eat together while Helen stayed with Lucy. We love you Helen, and can’t thank you enough for all that you do!
I was in a mood all day yesterday mainly, or partly, because I was exhausted. I kept telling Drew last night that I will be a better person after I get a good nights sleep (my definition of a good night is 5 hours in a row). Sleep was not in our cards last night, Lucy’s line repair was not done until 10:00, then meds, multiple diarrhea diaper changes, labs, more meds, multiple sheet changes, numerous alarms for occluded lines, and one little girl who played house in her crib all night. She finally fell a sleep for the night at 6 AM! I learned this morning, just before they dosed her meds, that someone wrote the wrong orders in the system for Lucy’s CoQ10 dosing, it was written for twice the amount that she normally receives. CoQ10 is a medicine that increases metabolism, mito patients get a special supped up formula of CoQ because of the unique way the medication gets absorbed. That error may explain our night, but with Lucy who knows.
Today is another day, and really we are just waiting to see what if anything grows in today’s cultures. Drew and the kids are on their way over.