Crushin’ on the Music Therapist

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The moment the lady with the guitar rolled into my room, I couldn’t take my eyes off of her. Her angelic, calming voice and acoustic guitar playing had my full attention. My first crush in LA. And my respiratory numbers were at its best since transitioning to the go home vent. This was much needed to break the tension in the room of alarms going off and the battle of mommy vs. Doctors.

Hana Cho, will you marry me?


How coincidental that the music therapist sang “Can’t Take My Eyes Off of You” to me – I feel the same way, babe. She also sang to me nursery rhymes, Somewhere Over the Rainbow, You Belong to Me (Yup, Ditto), Disney songs like Kiss the Girl (I’ll kiss you any day), Part of Your World, Dreams Come True (only with you, GurL), and Chim Chim Cher-ee.

I even got to participate in her band. 

 
Taking control of the mic to profess my love 

Mesmerized by the rain stick and her heavenly voice

Dancing and swaying with the nurse

Can’t wait to see you again Lady with the Guitar. You know where to find me 😚

It’s like running a marathon but 24/7

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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 🐧