Wednesday, October 9, 2013

Starting Month 3

We had another care conference yesterday after putting Kiera back on the hospital ventilator on Monday. It looks like she will be at least another month in PICU minimum before getting to come home. After being on the LTV home ventilator for 2 weeks, it was just not ventilating her sufficiently. She was unable to breathe off CO2 effectively and her levels were much too high. She just isn't ready. After 2 days on the hospital vent, her PCO2 levels which were in the 80's are now down in the 50's (40's being normal). Unfortunately, this means that the saga of daily hospital trips continues. They also moved us to another room, as per protocol for infection control, so we lost our beautiful windows in the corner room. I'm not totaaly sure how I've pushed through for 2 months already, and a 3rd month is daunting. Poor Kiera must be so miserable and pent up. There's only so much to do in that room on a daily basis. Like Rapunzel, she can "read a book, or maybe two or three, add a brand new painting to her gallery, or brush and brush, and brush her hair." That, and jigsaw puzzles, playdoh, and Disney movies can only go so far. The hospital is definitely no Disney vacation.


Rain said...

Praying for a healing miracle for Kiera. I hope she's able to start walking around again and moving around and get back on the home vent. I pray strength for her and you guys. No the hospital isn't a Disney vacation. I hope OT comes in and works with her alot. Can she use the PMV? What kind of a reserve does she have during a trach change? I hope there are nice people around her alot. I wish we could come visit. Did she see the balloons the other day before she changed rooms? I'm thinking of you guys, and will pray for Kiera. We love her so much. We need her to get better and out of there!!!! And once they give you the green light to leave, run!!!!!!

Kiera Rose said...

What's the PMV? Trach changes aren't a problem. Frankly, we are surprised that she needs the vent at this point in the game.