Day +19

Another good day with a happy baby.

Numbers are still going up--neutrophil count is at 475. Inching towards that magical 500 that she has to hang out at or above for 3 days to be considered engrafted. Now the watch out is for signs of GVHD--did I mention that? (ha!) Seventy percent of all unrelated donor recipients get some form of acute GVHD, so they are just waiting for hers to present at any moment.

As the PA Natalie said today, "I'm just waiting for her to rash up!"

I said, "How about the possibility that Zoe could be in the other 30% that doesn't get acute GVHD? Would that work for you?" She loved that idea.

I still try to have no attachments though. (again--ha!)

Zoe had another platelet reaction today--a fever spiked to 39.1 (I can't tell you what that is in Farenheit, but I know it's a fever). This reaction happened after a dosing of matched donor platelets. It is getting to be quite the challenging platelet dance with her.

Ideally they would love to get Zoe off of her IV nutrition as soon as possible, but, as happens with babies who don't eat for awhile, she has apparently forgotten how to swallow. Oral dosings of Tylenol during fever spikes have recently illuminated this development; the liquid pools in her mouth, and then causes her to gag and vomit when it finally trickles down her gullet.

Normally, they would put a nasal-gastric feeding tube from her nose to her gut so that they could get feedings and medication in (almost) the old-fashioned way. But, as Zoe's platelets are so low, they don't want to risk doing anything that might possibly create an injury that could bleed without the ability to clot. Shoving a tube through her nose, down her esophagus into her stomach is just tempting trouble too much.

The ideal thing would be to get her to learn how to swallow again. The OT/PT's here at Seattle Children's are specialists in suck/swallow disorders (we had seen them for help when Zoe was 11 days old and still unable to nurse). But I wasn't too thrilled to learn that part of their assessment involves Zoe ingesting Barium so that they can see, through radiological means, what's going on physiologically.

Well, I've trusted the process thus far, so I guess I will just keep going with that tack. Nothing about this process has been intuitive for an alternative healthcare practitioner like myself; we are well beyond the realm of homeopathics and diet tweakings. I love naturopathy, but have I been recently grateful for the world of allopathic medicine!

Swallow study is scheduled for later this week.
------------------------------------------------------------

Got to take that wildlife walk today with a friend who studied as a naturalist. Amazing what a difference trained eyes (and good quality binoculars) can make: she helped me see a beaver-eaten tree I had missed each previous walk, a turtle, a red-tailed hawk, cormorants, a falcon flying in the distance, an eyrie, many different duck species (can't remember them all--write the names down in the comment section, Cinny!), and killdeers. Saw the eagle again--that's 4 for 4 sightings!