6 months, 3 weeks, 1 day since diagnosis
Riker's definitely not feeling any better. She's unable to stay asleep but is always exhausted. She's got very bad diarrhea and seems to be in pain. Whenever she's awake, she's either screaming or cuddled against my chest sort of staring. Yesterday was a national holiday so the clinics were not open. She wasn't bad enough to be taken to an ER. (I've vowed not to bring her to one unless I have to) So, I spoke with the on call doctor a couple of times yesterday and waited it out until today when I could bring her down to Scarborough for a clinic visit.
Despite the negative reason for the visit, it was really great to see Riker's doctor. We haven't seen Dr. Stanley since we left for Boston and he's been missed. His conservative nature and very thorough approach was welcome today. Despite Boston's nonchalant attitude towards the diarrhea, he was more concerned. He questioned GVHD and was concerned she may not be tolerating her formula. Regardless, he was interested in trouble shooting the problem and helping to bring Riker relief.
So, for the next 48 hours, we're giving her nothing but Pedialyte. If she's having any trouble with her nutrition, it should be relatively easy to identify it this way. Of course, if she's not, we'll have, at least, ruled out one thing. We also had blood drawn for a chemistry analysis since the med changes made on Friday could also be the cause of some of her changes.
We were already scheduled for a regular clinic visit in Scarborough on Thursday so we'll be able to see Stanley again then. Hopefully, Riker will improve by then, either way. She's so uncomfortable and Mommy is completely drained! Hopefully, she'll sleep a little tonight so that I can.