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Things are kind of looking up

Yesterday was kind of another blah day but so far today has been pretty good. Raya still has funky smelling stools (i.e. techincal term for poop. They don't say "poop" here.) because of the c. diff. but she's feeling pretty good & has resigned herself to the fact that she will be spending 99% of her time in her little monkey cage so she's doing a pretty good job of entertaining herself in there. I don't want to get what she got so I'm using gloves to change her diapers now and wiping everything down with an industrial-strength germicidal wipe afterwards AND scrubbing my hands with soap & water for the length of the Happy Birthday song after that. It may be neurotic and slightly overboard but it makes me feel better. I'm also using the wipes to scrub down things that the nice cleaning ladies don't scrub, like the lids of the hamper & garbage can which is where Raya's diapers go when they're waiting to be weighed, and the bathroom door handle & faucet handles in the bathroom.
I FINALLY got a hold of the lady at the hospital in Ohio. It was kind of a disappointment because she told me that Raya's case will be presented to the motility team on Friday and they'll decide IF they'll be doing testing on her and if so, what tests they'll do, and they'll triage her case to see if it's urgent or not. I was under the impression that it was a matter of WHEN, not IF so that didn't make me very happy. She also said that I'd be contacted immediately if they decide not to do testing but that if they ARE going to do testing, the case will be turned over to a nurse for scheduling & she'll call me in a couple of months to schedule and that they're currently scheduling 4-6 MONTHS out. That's a LONG time, especially when this stuff has been going on for SO. Stinkin' LONG already. I told her that if it would help, she could let the motility team know that Raya has been in the hospital for 9 days now and that the GJ tube has not helped like we had hoped it would and the vomiting has actually increased in frequency since she got it. She said she'd put a note on the chart. So now we are praying for the team to feel as urgent about Raya's case as we do because I don't know if I can handle 6 more months of this, especially since she is not as stable as we thought she was. Ugh. BUT the good news is that I did finally get a hold of the lady and they are going to review her case.
She is down a little bit on her weight today (like maybe an oz) but I'm pretty sure it's because they didn't weigh her until about 3 hours after they normally do so she had shed some bodily fluids by then. :) She's been much more patient & friendly with the nurses & techs the last couple of days & I think she's learning to differentiate between harmless things like getting her tummy listened to & getting her blood pressure taken and getting blood drawn & IVs started. That will be a very good thing if she can learn that!


  1. It's not neurotic. It's having a kid that is in and out of hospitals/doctor's offices and the like (which are all SUPER germy). I've started singing my abc's as I wash my hands.
    Mom mother is coming to watch Henry next week so we can keep him out of daycare. Her welcome gift -a bottle of hand sanitizer. And she, like the kid is on lock down. Not going anywhere.


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