Trying Gamma Globulin and Waiting

Annie's temperature continues to be inconsistent, so they've told us that she really can't get her PICC line until she's be a full 48 hours without a fever.  Her temps will stay down for 12 hours or so, then go up for 6-8 hours, then return to normal, then spike again.  I'm starting to wonder if she will ever qualify for the PICC line.  Right now they feel like the risks of the PICC with a fever by far outweigh the benefits she would get from the PICC.  She does still have a peripheral IV and continues to receive TPN and lipids, but the peripheral IVs just don't tolerate TPN and lipids for long.  The cause of these temperature spikes are still a mystery.  They did more blood work yesterday including a blood culture, and also a urine culture.

The infectious diseases team tried something new yesterday that is rather experimental.  Annie got a dose of gamma globulin fed through her g-tube.  Gamma globulin are protein anitbodies that have been extracted from the blood of donors.  Supposedly, when given through the stomach, it can bind to the c-diff toxins and help prevent the diarrhea.  Although it doesn't necessarily treat the actual c-diff, it can treat the diarrhea symptoms.  This in turn may actually allow the antibiotics to remain in her bowel longer and hopefully be more effective.  So Annie got a one-time dose of gamma globulin last night from 4:00-6:00pm.  The ID team says that if the gamma globulin works, we could see an improvement in the diarrhea in just a day or two. 

I'm starting to get rather discouraged.  Today is day 11 in the hospital and she's made no improvement with the c-diff.  It's a blessing that she is hydrated and happy, but as far as treating what's wrong, no progress has been made.  The doctors all agree that we need to stop feeding Annie and give her bowel rest for 1-2 weeks.  So all of her g-tube feedings have been stopped for an indefinite length of time--most likely until the diarrhea starts to improve.

So the only plan in place is to watch her temps and get a PICC line in as soon as she's able to go 48 hours without a fever, stop her feeds until diarrhea improves, continue giving vancomycin and flagyl, and wait some more.  The GI is concerned about other issues going on since c-diff would normally have responded by now, but they are too fearful to do a colonoscopy right now.  Because Annie is still showing high levels of c-diff, if they were to perforate her bowel during a colonoscopy, the c-diff could "escape" the colon and cause much more serious problems, not to mention the issues related to the perforation itself.  So for now, they are not willing to take that risk.  They will begin to consider a colonoscopy only after the diarrhea has started to improve.

People have started asking me if we know when Annie will get to come home.  No one has mentioned any kid of time line to us.  Considering that after 11 days now and no progress has been made, we expect to be here a long time.  With the treatments and strategies they are trying, we expect that Annie will be in the hospital for several more weeks.  We try to not think that far ahead, but try to just take one day at a time.