Wow! Today marks one year at home for my 2 1/2 yr old! What a year! She's come down on her ventilator rate to 14 from 26, and today her 02 is at 2 1/2 liters. We've only had to re-admit her to the hospital 6 times this year. 3 were pneumonias, 2 were surgery or procedure related, and 1 was that first night home when we called paramedics and Kiera was blue and not moving....incidentally worst night following our best day. Thus, the title of this entry is explained. Our first day home was the very best day, and our first night was an absolutely horrible nightmare of a night. When I look at her happy and playing today, I can't believe that I ever saw her the way she was that night. So, I can't help having such a bizarre reaction to this anniversary. I totally can't believe we have gotten through a whole year of mostly interrupted nights and a whole year of carrying the heavy ventilator up and down the stairs twice a day and a whole year of going through an equipment checklist in my head before getting in the car and a WHOLE YEAR of bagging and trouble shooting and overcoming ridiculous scenarios that one only sees in medical TV dramas.
We look forward to what our new year will bring: Fewer hospitalizations, we hope. Potential weaning from the ventilator to CPAP in the spring. Maybe a 3rd birthday not on the ventilator? Kiera walking without the aid or support of furniture? Maybe Kiera talking, laughing out loud, or eating?
We are so thankful to have had the strength to persevere this long and to have had a chance to experience all the good things Kiera has brought to our lives. Every morning she kisses each of us and then makes mommy and daddy kiss at the top of the stairs before we go down, and every night she does the same at the bottom of the stairs before we go up to bed. What a kid!
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I can't believe it! Congrats on gotcha day! I've been reading your blog for so long. I started reading it before Emery came home so I'm so amazed at her progress, from those awful episodes before you went to Texas, her miracle airway improvement, and then finally home and watching her grow and getting stronger. She is an inspiration!
Won't it be the day when we don't have to lug all of the equipment? Well, I never had a vent just the buttload of O2 and feeding tube crap. I remember the days when I thought "I can bring my baby home on all of this stuff and be fine," and then realizing a year later that I was going to have to manage a toddler on all of this stuff haha!
She is beatiful. It's been great reading about your journey.
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