Things are moving in the right direction… mostly… I think. Emerson remains on BiPAP, but we’ve been able to come down on her O2 settings. She is weaning off sedation drugs from intubation. She even got out of bed and stood on her own two feet this afternoon. She was very shaky, but she did it.

Those darn kidneys though! They continue to act up and stump everyone. Lots of doctors are involved & several met this afternoon to discuss what is happening and where we go from here. They’ve done umpteen tests and nothing is adding up. We know Eme has central DI, and we think she has a salt wasting syndrome, but there’s something else going on too. I just had a long conversation with the PICU attending and there are some interesting new theories and developments. I’m very encouraged. Stay tuned for more on that…

Eme’s heart rate remains very low and she’s bleeding from several sites – mostly underneath her skin (I’ll spare you the pictures, they’re not pretty). She went into DIC with this infection and we are seeing the fall out from that now. DIC is an acute, potentially life-threatening blood clotting disorder that can occur in the face of sepsis. She’s only gone into DIC a few times, which underscores how serious this infection was. Her numbers are improving, though, and the bleeding should resolve. Hematology is watching closely.

Otherwise, Emerson has been sleeping much of the day; recharging her batteries I’m sure. She doesn’t have much reserve, and the events of last week hit hard. It will take her a while to regain her strength… until then, we take little baby steps – push a little, but not too hard – and wait for those kidneys to wake up!


2 thoughts on “Tuesday

  1. Recharging and taking baby steps…these are good words to read. Baby steps shows going forward, no matter how slowly. And standing for a bit…yeah! I hope the new ideas and theories will help. There are so many scary things you mention in your letters, but there are also many positive things, too. One of the most positive things is the obvious love and support Emerson has from you…she gains her strength from you, Erika. Prayers for a better day tomorrow with no new surprises…unless they are good ones!

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