Oops...3 out of 4 Thanksgivings spent in an ICU

This will be brief because I need to go to bed. I slept at the hospital Tuesday night when we had to admit Kiera to the PICU around 10PM. She is doing better now than she was at home last evening. We had reached our limits for keeping her SATs up on our equipment where she was de-satting on 6 liters and after piggybacked nebs (3 of 5mgs each in an hour). Now she is on the "big ventilator" (the 840) and increased O2. She spent 24 hrs on continuous albuterol nebs and we are trying to stretch her to a do-able neb schedule for home. As long as nebs can get stretched tonight, we may get to try putting her back on her home vent tomorrow and hopefully get her home as soon as Friday. I guess Kiera just wanted to spend her Thanksgiving with the many, many health care workers for whom we are thankful this Thanksgiving and the last four. It has left us with a very empty, quiet house tonight and yet, again, another holiday spent in a hospital. Good news is that her preliminary results from her respiratory viral culture seemed to come back negative on all the big viruses they test for. Bad news is, I guess we don't really know what has caused her to have such a severe hiccup. We are still waiting for a final culture from her trach aspirate which could give some idea. Of course, she is on steroids, antibiotics, etc.

Cute things: Last night when bagging her at home through some bronchospasms, my mom was here, and Kiera started blowing kisses to grandma and the nurse WHILE I was still bagging her. It was the weirdest "Rose Bowl Parade" image. Then, in the hospital this morning, the first trip since she could walk and was healthy enough to stand, she stood up in her crib and started messing with the touch screen hospital monitor above the bed that monitors her O2, heart rate, etc. She must have thought, "well this is a TV I haven't seen before." I would have cracked up if she had figured out how to change their settings without the nurse seeing just to see the reaction.

"Cruising Along"

This wil be quick...I have been so busy it is difficult to have time for everything. Probably a year ago I bought Kiera a ride-a-long toy at our local kids' stuff thrift store for $7. At the time, her legs were too short to reach the ground while sitting on it, but I thought she could use it to walk. Recently, after growing a bit and learning to walk, she has learned to push herself on the car and steer. It's a Winnie the Pooh vehicle with lots of bells and whistles and she loves to express her "Road Rage" by honking her horn the whole time. I am so glad I didn't give up on it. She is so cute, and it helps her break up her secluded indoors day.

Friday we went down on pressure support a smidge. She is back on CPAP while awake and a rate of 10 when asleep. Her pressure support is currently 12. Next will be 9 and then 6. Once we are at 6, Dr. Glasser says we can try an HME with just oxygen (I assume while awake only). I am not sure on a timeline, but I'd like to guess that maybe by Christmas we could have some ventilator free photographs to post. With all the toys she's accumulated for "therapeutic reasons" being rid of her ventilator is really the only Christmas gift she needs. We'll see. All depends on whether or not Kiera gets sick.