Continuing from home

(Sorry to leave you all in the dark)

Maggie was discharged on Thursday and has done fairly well since then.  We had a couple days with only 2 dirty diapers (quite a relief from 20).  The diet update is that Maggie is allowed only water and some sugar-free jello.  Well, since Maggie's been home, she's been quite hungry.  Hungry enough to eat a whole box of orange jello in about 24 hours.  We've had a little bit of diarrhea (bright citrus orange!) in the last 12 or so hours, so we're wondering if we overdid the jello.  We're going to cut back so we don't risk the progress that we've made so far.  We are 1 week into "project starvation" and we don't want it to go to waste.

A homecare nurse took some bloodwork this morning and apparently Maggie is well hydrated at this point (despite the orange stuff).  So that was nice.  

We were getting used to Maggie being easy to care for in the hospital--she cuddled with us and would fall asleep very easily.  That was the case through Thursday night or so, but she's become a bit more energetic since then, and now protests our new bedtime methods with lots of screaming.  Fortunately, once she is asleep, she has stayed asleep through the night.  We are hoping for continued improvement with her sleep.

Today especially we've been noticing that Maggie seems to be hungry.  We haven't eaten in front of her for a week, but it is just apparent that she wants some food.  She's pretty desperate for it, actually.  So we'll check to see if they can increase the flow rate on her feeds. 

This all still feels like a daunting task--Maggie is needy and fussy (and hungry) and it seems like the next few weeks will just drag.  Hopefully we're on our way to getting Maggie taken care of.  We should get biopsy results (from her endoscopy and colonoscopy) on Thursday when we see Dr. Kahn in her outpatient clinic.  Please pray that they find a cause for her diarrhea that is simple and easy to treat.  

Good news for the week:  As of now, Maggie is scheduled for surgery on Wednesday to remove her Broviac to trade up to a port, which requires less maintenance and will allow her to get as wet as she wants.  We have longed for that procedure for a long time!  She'll also get a spinal (maybe a bone marrow aspirate, too) and will get low dose chemo and start a week of steroids.  Lots of fun lies ahead.  As steroids often cause increased appetite, we are frightened about how the "starvation project" will go during that week.  As if this week wasn't challenging enough.  

Not to complain...we're happy to have no news on the cancer front (no news is good news) but we're ready for a break from the highly stressful stretch that we've been on.