Lydia hospital day 38

This is an odd sensation. I’m in Lydia’s room but I am calm.

She is asleep, so I don’t need to protect and entertain her, and she has been getting better, so there is less to worry about. Last night Jon and Rose got to visit—Lydia was getting sleepy and was signing less often, but was still interacting mostly like her usual self. Overnight she slept 8 hours, woke up and played for a while, and went back to sleep before I got here at 8a.m. No crises, no fevers, no sign of withdrawal, no extra or new medications. I'm looking forward to seeing her again today.

Today’s plan is to continue tapering her last i.v. sedative. It should be gone by Tuesday. Tomorrow they plan to change her ventilator to a mode that provides even less of the work of breathing ... or see if she can do without it altogether.

hospital day 37: she's 3 and ... sheee's baaaaaack!

Lydia is celebrating her 3rd birthday with a princess tiara, balloons, a bunch of presents, and communicating! She's sitting up and I've seen her sign and/or mouth all of these words at least once:
  ice cream, milk, Mom, book, Signing Time, cat, dog, fish, Dad.

PEEP still down to 5, FiO2 50%, now in "pressure support C/PAP" mode.

So, hooray! Still getting better.

Lydia hospital day 36

Sorry, faithful reader, for skipping a day.

Yesterday afternoon Winona called me to say "Lydia is back!" Lydia had signed "book" and "want" and then turned pages in a book (one of her favorite activities), and generally had played with Winona all afternoon. I came over and of course Lydia ignored me and just sat there. I'm not skeptical any longer, but I'm jealous that I missed it.

This morning I was with Lydia for almost 2 hours and she was sitting up most of the time, mostly ignoring Dad, ignoring books (one of her two favorite activities before hospitalization), and trying somewhat successfully to get her straight-arm soft casts off (they prevent her from pulling on tubes that shouldn't be pulled on). She looked excited when I turned on a Signing Time video (her other favorite activity). So, she's not back yet, but she's making progress.

Lydia is off her diuretic, she is off the Versed (an i.v. Valium-like sedative), and her ventilator is down to 40% FiO2 and a PEEP of 5. Speech therapy will assess her today to see if she can safely eat or drink. Constipation has still been an issue but is improving. Her only remaining i.v. sedative is Dilaudid, down to about 2/3 of last week's dose. She is still getting morphine and lorazepam by tube (she can drink those when the feeding tube is out). We should see by this evening how much difference this morning's decrement in her Dilaudid dose has made.

Lydia hospital day 34

Today Mom saw Lydia sign "more" after hearing a verse of "the wheels on the bus," and she made a "shh" sign at the appropriate place. Dad is alternating between jealousy and skepticism, since he was not there to see it. When I was there, her eyes were open but she was not especially tuned in.

The plan is still to gradually taper Lydia's sedatives and ventilator support.

Lydia hospital day 33

Yesterday and today were largely the same. She is initiating every breath, she's off the NO, and ventilator settings are down to a PEEP of 8, FiO2 50%. She is on antibiotics for fever, with bacteria and white cells on her trach tube. The current issue is gradually weaning her sedation (opioids and benzodiazepines) down from their high levels from the past few weeks. Until that is done, it is impossible to know what to make of the fact that her brain is not really working right (she's acting more like a 3-month-old than like an 18- or 20-month-old). So, until she can tell that Mom or Dad is here, or can miss us, we're here for rounds, and we check in 2 to 3 times a day, but otherwise we leave Lydia with the expert care here and try to take care of the other kids, or each other, or the rest of life. And try not to worry.

We are so amazed at the continued kindness that so many people are showing us. Thank you!