Clinic visit

Today we visited the Clinic and Dr. French for a count check, and to check on her hydration levels.  We were anxious about her hydration and actually had a bet about whether or not we'd be admitted for more hospital time.  As it turns out, the diarrhea continues to be bad enough that one of Maggie's hydration counts was halfway back to where it was when we were admitted on Sunday.  Also, her potassium level is quite low (potassium is affected by chemo, but more directly is lost from the body with diarrhea).  Upon hearing these levels, we still weren't sure if we'd be allowed to go home or not.  Ultimately, Dr. French decided to send Maggie home on IV fluids overnight and to check the levels again tomorrow.  We were grateful to get to go home and hope that her levels recover well with the fluids.  

The diarrhea issue is probably not going to get resolved super immediately, that's what we're told.  Dr. French thinks that her small intestine is probably smooth and inflamed and therefore, not able to slow the food down on its way through, nor is it able to absorb enough nutrients.  I think we had 10-15 dirty diapers during the 12 hours of Maggie's feeds last night.  All of the chronic diarrhea and chemo has likely led to this.  He doesn't believe at this point that there is an infection in her intestine, though that's still possible.  Stool culture results aren't in yet.  

We are changing the formula that she gets for her feeds to a type that is easier to absorb, and are continuing to add fiber to the formula.  Also, we're going to continue replenishing normal bacteria into her gut with lactobacillus (which is also found in yogurt...if only Maggie would just eat yogurt!).  These are part of our effort to let the intestines recover.  When the chemo lightens up in the coming months, that should help, too.  Otherwise, it just takes time and patience, I guess.  If the new antibiotic that the GI specialist put her on doesn't help, it seems likely that Maggie will get a colonoscopy in the coming weeks to pinpoint what is going on.  Then, they'll have a better idea of what the condition of her intestine is, and they can biopsy to identify any infections, bacteria, parasites, etc.  That seems to be a good solution, but they can't do that procedure until Maggie's counts are good.  Any probing into her rectum is a huge infection risk when her counts are down as the tissue there can tear and bacteria has a free ride into her bloodstream.  The good news seems to be that intestinal infections, if Maggie has one, are most dangerous by their connection to diarrhea and dehydration--they don't usually pose a risk of spreading throughout the body and causing bigger risks to leukemia patients.  So, we are working to manage and protect against dehydration and will be patient, waiting for some relief and resolution.  

As for Maggie's blood counts, she is close to zero; the chemo from last week has taken its effect.  They have a couple more days of dropping before they're likely to start recovering and Dr. French is anticipating having to infuse some platelets early next week.  We need to keep Maggie isolated and used a mask to take her out of the hospital after hearing how low she was.  

We have been discouraged at times during the last day or so as we recognized that our discharge on Tuesday did not represent major progress with the diarrhea issues or hydration concerns.  It is all a bit frustrating and nerve-wracking.  Also, Maggie has lost 2 of the 2.5 pounds that she had gained being on the feeding tube over the last month.  Her "bowel rest" in the hospital might have helped her digestive system (or maybe not?), but it cost us some weight.  Hopefully that will come back quickly.  We as a family are also going through some uncertainty about what our work/insurance situations will be in the upcoming months and there is a looming dissertation defense that is being prepped for.  Hopefully we will find our way through these challenging weeks.  We need prayer for patience, for Maggie's healing, protection from infection while her counts are low, progress with the diarrhea, and peace of mind for the other things happening in our lives.  We remain grateful for no negative reports on Maggie's cancer--this is the biggest thing.

Someday we'll look back at these weeks and months, and I can't imagine what our emotions will be.  As tough as it has been, we continue to creep closer and closer to our goal.