I haven’t been doing very well since I was transitioned to the Astral go home vent. The respiratory team made some changes to the vent but I’m still on a PEEP of 8 and feeling very air hungry. It’s even hard work for me to sit up even though I usually love that view to be Mr. Nosy and check out what’s happening. The ENT doctor came by to scope down my trachea tube but felt that the new cuffless trach I have with shorter length of 42mm was fine even though I use to have a custom 50mm length. This sounds like a vicious cycle of what happened at CHOP when I transitioned to a go home vent and my trach was the wrong size. I feel like no one is listening to me. I know mommy and daddy are trying to fight hard for me but those other uprights don’t seem to be taking much action. Weekend staffing, FTW. I miss my east coast peeps 😘 Maybe I just need more time to adjust to this new way of breathing.

“It’s ok daddy, here’s my hand to let you know I’ll be ok.”

“But thanks for the reassuring kiss.”

Ok let’s do what we do best now. 💤

Chillin’ on my fav fluffy soft squishy cushion.

Though I wasn’t fully awake for a special visitor, I could tell she was a great friend of mommy’s because all I could hear was giggling in the corner and an overall positive, happy aura which made me more relaxed. Thanks for my fluffy blue penguin Auntie Karen! Can’t wait to snuggle with PenPen 🐧