The Very Bad Horrible No Good ICU Experience

First, we’re sorry this update took so long. It’s been a VERY long, emotionally charged 12 hours.

Most importantly, Avery seems to be making a GOOD turn today!

Her fever got as low as 99.3°F without Tylenol and while sleeping in Daddy’s arms. It eventually got back up to around 101°F, but it took longer to rise and hasn’t got as high as yesterday.

Plus, she was actually able to sleep and FINALLY eat this afternoon. No one slept or ate last night.

Without going into a full-on rant about the ICU experience, I’ll simply say that our regular medical care team is much more attentive, compassionate, understanding, and caring.

Not to mention, since they know Avery, as well as Mom & Dad, they communicate well and never dismiss Mom & Dad’s thoughts on medicines, procedures, and all things Avery.

A lack of communication from the ICU team also delayed Avery’s ability to eat and oncologists making rounds this morning or even being made aware of her care overnight.

Fortunately, the amazing day ICU nurse has been able to make the connection with the oncology team, so Mom & Dad are finally being heard and they hope to leave ICU today. (They’re waiting on bed availability in the BMT unit).

Back to Avery specifically, neurology does not believe she had a seizure based on the CT scan and the EEG readings they’ve collected thus far.

Therefore, the EEG is done and they are removing head leads. With no need for the EEG, this clears them to move out of ICU.

Mom & Dad can’t wait to get back to the BMT unit where the care team all know and love Avery. We cannot express how grateful we are for our regular care team.

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