Where Do We Go From Here

It's been 3 weeks now since school started, and my poor Angel hasn't even had a chance to start school yet.  I feel so bad for him.  I know that he's only in Kindergarten and not missing that much yet, but it's the whole experience that he's missing out on.  The biggest thing is missing out on his therapies.  Most importantly, his physical therapy.  Our social worker at the hospital sent a request to his school for tutoring and services while he's out, but I haven't heard anything about that yet.    We've been to see Gastroenterology and Infectious Disease to try to get some stuff figured out as far as this whole Cdiff infection and getting rid of it once and for all.

     At our visit with GI  we decided to make a change to LJ's formula.  I felt that since he has been using the same formula since after transplant, it was worth trying something new.  I had been reading more about Cdiff and the fact that it needs to be fought off by "good" bacteria in the gut.  If  LJ is not getting enough "good" bacteria from the food he is eating, then it would be hard to combat the bad bacteria.  So, now we are in the process of switching him to Pepatamin Jr. with Prebio which has some of the "good" bacteria that he needs to help fight off the infection.  He has been tolerating it well, which is good, and we are slowly increasing to switch him completely to this formula.  LJ is also back on the Vancomycin, which he is getting 4 times a day, but unfortunately, it seemed to have slowed the diarrhea down the first few days he was on it, and now, he is back to going just as much as before....Ugh!  When we went to see ID, I spoke the the doctor about the different treatment options that are available.  She told me in adults, they do something called fecal transplant surgery, which is just as crazy as it sounds, but it has an extremely high rate of success.  It''s out something that they are trying on children, and not something thy do at all in this area anyway.  Plus, with LJ being immunosuppressed, it would not be a good idea to transplant somebody else's fecal matter into his intestine, regardless of his age, so that is out.  The other options, are to try another taper for the vancomycin, which we are doing, and we are going to add a probiotic to his regimen at the same time, to combat the bad bacteria.  If no improvement is seen in a couple weeks, then there is another medication called rifaximin, that is supposed to help with this overgrowth of bacteria, and we will be giving that a try as well.  For right now, that is the game plan.  Once we get to that step, they are going to run some more tests to see if there is anything else going on besides the Cdiff that could be making this harder to fight off once he has been treated long enough to where it should be going away.  Lord, I hope and pray that it goes away this time.  Not only do I want LJ to get to school, but I hate seeing my baby suffer like this.  He goes through enough outside of all of this.  It just seems so unfair.  My baby can't seem to catch a break.  Every time I turn around it's something else, or the same thing over and over, but always something.  I just want my boy to have a chance to be a child and have some time where his life seems somewhat "normal", whatever that is.