May 7, 2016 12:48am (Scott)

It was just mid February, but it seems like a year since I spent 12 nights in a hospital room caring for our little dragon. She and I began referring to our special club as The Night Sh572d8091af3d7926039cd3caift. Well here we are again. Maya and I are settled in a very nice room at Renown and feeling like it’s our home away from home. The staff is great, the facility is modern and spacious. We have no complaints save the obvious.

To review, Thursday night Maya started to show signs of what is probably a cold. By 2am she was running a temp over 100, and by 3am she was at 101. These are temps taken under her arm, and 100.4 is a firm threshold that triggers standard protocols. We arrived at Renown’s Children’s ER about 4am, and the investigation began.

Tests for influenza and RSV were negative. Broad spectrum IV antibiotics were started as a precaution, and blood samples were taken to monitor for bacteria growth and to determine the all important ANC.

Maya’s ANC was quite low–290. We’re 4 days out from her last dose of chemo and 14 days out from the previous one, so there’s reason to expect her counts might be suppressed. The presence of a virus will also lower counts, so I don’t think anyone was terribly surprised. The disappointing thing is that fever combined with an ANC below 500 adds up to a minimum 48 hour stay in the hospital. In order to be cleared to go home, she needs to be free of fever for 24 hours, her blood culture must show no evidence of bacterial infection for 48 hours, and her ANC must be at least 200 consistently and must show an upward trend–we don’t know yet if she was headed up or down through 290; we will know more in the morning with the next lab draw.

As usual, Maya has been a superstar today. Aside from a mid-grade meltdown about 11am, which could easily be explained by no sleep plus no breakfast plus strangers suctioning out her nose without full dragon consent, she’s been taking things in stride and finding the fun and adventure where she can. There are IV fluids and antibiotics administered through her port, her fever is being treated with Tylenol, and there’s the standard bowel care measures. Otherwise we’re just playing the waiting game to see what numbers will come up next time we spin the wheel. I really hope it’s not as random as that sounds, but uncertainty is unavoidable more often than not. 572d80a5ac7ee98b244dc967

There’s a good chance we’ll be here more than 48 hours (I wonder if that’s a good excuse for totally dropping the ball on Mother’s Day?), but there are activities to keep Maya busy, and we can have visitors. This is important because seeing new faces and hearing new voices helps to keep Maya energized and engaged (thanks to Uncle Butler for spending a few hours today and for delivering delicious smoothies!)

The dragon is sleeping soundly now, and I think I’d better do the same while I can. Thank you all for the caring comments and prayers. We are wishing you all good health and strength as well.