Out with the New, In with the Old

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So I guess I didn’t do that well on the Astral go home vent. Even after they increased the PEEP from 9 to 10, I still wasn’t able to tolerate sitting up for too long and I usually love checking out the scene in that position. The team has decided to put me back on the previous iServo vent to let me rest/recover for a few days before testing me out on the go home vent again but with different settings.

Before (on the go home vent);

I’m so miserable and grumpy. Why doesn’t anyone play with me.

Please someone pick me up. I don’t want to lay down all day anymore.

I’m going to just sleep instead. Breathing is hard work on this different vent.


After (switched to original vent at 5pm):

I’m ALIVEEEEE! Where da party at, Ladies!?!

Flirting with Speech Therapist. She sings to me too, tough choice between Tatiana and Hana. 

Alrite, I got my party hat on. Let’s do this!!!

Sup. I’m only wearing this because it seems to attract more attention. Otherwise, my head is usually steaming and sweaty all the time. Please turn up that fan.

Getting my read on

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The great thing about the Children’s Hospital of Los Angeles is that I get a new free book to keep every week day! Mommy goes to the reading library (called Literally Healing 😆) to pick a new one for us to read together everyday. There’s summer evening hours now so I might get 2 a day!


Mommy reading the Little Prince before bedtime

I’m really digging this chemist book. I was even helping mommy hold the book. Finally something more substantial than one word per page. I aim to win the Nobel Peace Prize one day. Mommy isn’t very good at anything quantitative so I will help her when I grow up.

Morning smiles to my loveys

I was feeling a little bit better today after the Pulmonary team decided to move my PEEP from 8 to 9. I still think I probably need increased PEEP to compensate for a less powerful/intuitive vent. The ENT team came over today to scope me again and decided to put back in the old custom trach from CHOP to test try if that will help with enabling me to sit up again. They prefer for it to be slightly shorter in length, bigger in diameter, and cuffless. Let’s see what they can custom order.

Sleeping and chilling with my legs crossed while holding BunBun