Grateful for Mistakes!

I realize I've neglected posting an update for a couple days, but there just really hasn't been anything too exciting to post about.  We're still just continuing the same treatments and waiting to see some results.  However, one nurse on Tuesday may have just been inspired in making a mistake.  She came into the room with Annie's gamma globulin and her IV flagyl.  I got up to vent Annie's stomach to make sure it was ready to start getting the gamma globulin--her risk of vomiting is much higher if she has built-up air in her tummy.  So while the nurse was getting the IV flagyl started, I vented Annie, then sat down to wait while the nurse continued programing the IV pump and finished getting the flagyl going.  I got busy looking at my computer while I waited for her to hang the feeding bag with the gamma globulin, when I looked up and saw that she had bolus-fed the entire gamma globulin dose to Annie!  (Meaning, instead of having it run slowly by pump at 20cc/hr into her stomach over a 2 hour period, the nurse just inserted the entire dose through Annie's g-tube in just a matter of seconds!)

I jumped up so fast when I realized what she was doing and said "NO, NO, NO! She'll throw it all up if you bolus it in that fast!"  The nurse felt horrible, but it was too late, she had already put it all in Annie's stomach.  I immediately sat Annie up to help make sure she wouldn't start refluxing it up, and to help her not gag on her secretions, which would also make her vomit it up.  I nervously watched her for an hour hoping that she wouldn't throw up thousands of dollars worth of this gamma globulin dose.  Fortunately, she seemed to tolerate it just fine.  That night, Annie had no poopy diapers all night!  However, in the morning she had three large diarrhea episodes over an hour's time.  But the doctors think that having her go so long without a BM is significant progress.  So maybe this nurse on Tuesday was inspired to bolus the gamma globulin.  The ID doctor couldn't verify that a bolused dose would be any more effective than a slowly pumped dose, but since she seemed to tolerate the bolus well, we'll try to bolus the gamma globulin again today.

Even though Annie made it nearly 12 hours without any diarrhea episodes, we've been incredibly discouraged with the amount of progress Annie has made in the last two and a half weeks.  The doctors are still surprised that she has not responded to earlier treatments and is improving so incredibly slowly.  So I decided to do some more research and try to be more pro-active.  Fortunately, I remembered the other day that another Aicardi mom dealt with c-diff in her daughter for 9 weeks.  She had mentioned to me over a month ago that her daughter's c-diff didn't finally go away until she discovered herself that her daughter was on too small of a dose of vancomycin.  At that point, I just figured that Annie's vancomycin dose was accurate, especially because two different doctors had prescribed the same dose.  But on Tuesday, I started to do more research to find out really what dose she should be on.  I realized I didn't even know what her current doses of vancomycin, flagyl, and florastor are, so I immediately asked the nurse.  Sure enough, Annie can safely have her vancomycin doubled!  She's currently on 1g a day, and can safely take up to 2g a day!  (I did verify all this with Justin--he referenced all his pharmacy databases and agreed that Annie should be on 2g a day of vancomycin.)  This discovery left me feeling incredibly encouraged!

So I mentioned this to the ID doctor yesterday, along with the fact that we bolused her Tuesday dose of gamma globulin.  (She didn't necessarily think that bolusing would make it more effective, but agreed that if Annie could tolerate it we should continue to bolus her remaining doses.) The ID doctor was very kind and approved of our recommendation to double the vancomycin dose.  However, since Annie is near the end of the gamma globulin treatment, she said it's best to finish out one treatment before making changes to other treatments.  So we now have a short-term plan--which feels so good! 

Annie will get her gamma globulin dose today and another on Saturday (both bolused).  That will complete her gamma globulin treatment, so at that point they will re-evaluate and consider doubling her vancomycin dose and adding rifampin. We feel good about this plan, especially since our own research showed that rifampin with vancomycin has been a rather successful combination.  After that they can also consider rifaxamin or nitazoxanide.  After that we might suggest cholestyramine, another agent that would bind with the c-diff toxins similar to how the gamma globulin works, or try the fecal transplant.  We have also discovered that proton pump inhibitors can make c-diff more difficult to treat, so as a last resort we might eventually consider eliminating Annie's zantac from her TPN.  We're more hesitant to do that however, because being on a proton pump inhibitor decreases her chances of developing pneumonia if she were to aspirate.


So, long story short, we're feeling hopeful that Annie might actually be starting to make baby steps, and we feel more encouraged now that we actually have a plan of treatment for the next week or so.  Now we just need to devise a better plan for managing Molly and Lexie.  Although my parents are here helping out with EVERYTHING related to the children and our home, Molly particularly is starting to struggle with missing Mom and Dad.  Molly had a melt down yesterday morning and refused to go to school because she just wanted to be with me.  Justin eventually got her out the door over an hour late for school.  Then my mom came to be with Annie so I could pick Molly up from school and have some time with her.  Her choice of activity with me.... go to a pet store to look at kittens!  So we did just that and she loved every bit!