Kiera's got a whole new trach tube!

Okay, sorry it has been a few days since update. I haven't been able to log on from my room like I could Tuesday. Jer and Matt got in Thursday night, and it has been so nice to have them here.
We went out for probably the best ever Indian food last night at the Bombay Brasserie in the university district to celebrate because Kiera is doing SOOO well.

You won't believe the changes for Kiera so far. Thursday she had a bronchoscopy around 6:00PM and the ENT doctor chose to put in a Shiley air cuffed trach tube, in a regular 41 mm length (I think). I feel bad because after getting the transport company to agree to replace her trach tubes, I guess she won't need those ones after all. The Shiley is made of a firmer plastic and had been discussed in ABQ but I thought it was not available in a pediatric size for Kiera. Anyway, she has been lots better since then. They had been weaning pretty agressively previously anyway so I'm not sure if the progress is from the different type of trach, the lower altitude, the weans on her meds, or that she was improving at home already and would have tolerated the weans there. Whatever the cause, today her ventilator rate is down to 26 from 46, her O2 is at 45%, her pressure support is down to 18 from 28, and her peaks are great! She is OFF her ketamine, and weaning on her methadone, valium, and prednisone. They may even start weaning one of her pulmonary hypertension drugs. FINALLY, they said today that they are considering moving her to the step down PCU unit from PICU on Monday!

Let's not count our chickens. We still know Kiera likes to mess with us. However, Dr. Mallory has said that currently he is putting lung transplant on the back burner. We will see where this course takes us. We still have a long road. During the bronchoscopy they found some subglottic stenosis in her airway above the trach tube, some scarring and narrowing around her vocal chords, probably from long term intubation. She will need her trach tube for 2-3 years until that can be repaired surgically. It will probably delay her talking, and I'm not sure how her voice will sound. In the meantime, I have some great material with me from my friend Kate in ABQ on baby sign language and will get more serious about implementing it with Kiera.

All the nurses and doctors here are very impressed with Kiera's social skills and interactive nature. They think she is doing remarkably for a baby who has spent her whole life in the hospital. She is having a ball. Yesterday she hung out with Daddy and I in her walker for a long time. Sometimes she just leaned back and watched us talk. Today she grabbed and looked at her foot! Here's a tip for the PT's and OT's reading....she has a hospital band or tag on her ankle that she got on admission and has been playing with it all week. I thought if anyone ever wanted their baby to find their feet, tying ribbons on ankles or ankle bracelets would do the trick. It has interested her more than any pair of booties ever has. She also grabbed my hand Thursday and pushed up to sitting with her other hand from her boppy. She has been wobbly sitting more lately too with her boppy's help.

Your prayers are working! Keep it up!

Love,
Therese