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.

Controlling Interest in Kiera Day!

Hooray! We officially possess over 50% of Kiera today! (and possession is 9/10th of the law, right?) She has had 585 days of inpatient hospital living and 586 days in our house! We don't win by much yet, but at least we finally get to say she's been at home more than in the hospital.

I'd throw a party, but we can't expose her to all the stuff out there and get her sick, or the hospital scales will tip out of favor. Maybe I'll just make a cake. Ooh...Pumpkin Dump Cake! Gotta love it!

A-Okay Doctor Day

Busy day, and Jer got it all done with the nurse while I was at work. It began with an o-dark-thirty (7:30AM) opthalmology appointment. Kiera's strabismus (lazy eye) may need a second surgical adjustment, but not unless she is scheduled for another surgery where he will go in at the same time. She has slight nearsightedness, but no need for correction at present. Then after rushing home for her 1 hour with her pre-school teacher, and a 100th viewing of The Little Mermaid, Kiera went to her 2:30 echo at the cardiologist...which she passed with flying colors so that the cardio guy says she is boring and that he doesn't want to see her. That means, pulmonary hypertension is still undetectable since stopping her sildenafil months ago. We'll see if that means she will stop another one of her meds, lasix. That would at least be one less thing during am and pm meds.

Kiera is currently doing great on CPAP while awake and with a vent rate at night or during naps. Her pulmo appt is Nov 6, so we'll see what the next step is. She is scheduled for an H1N1 shot on Friday. During most waking moments, Kiera walks in circles around our 1st floor with nurses or anybody available following busily behind with the ventilator et al. We are busy, busy, and I am pooped from teaching by day and watching her by night. I am definitely glad that I chose the middle school position over a high school or YDDC position, if for any reason other than the later start of my work day. We had a 7:30 dept meeting last week and a 7:30 am staff meeting yesterday, but generally school starts at 8:22 giving me the added time I need to be there with bells on (or at least one to two cups of coffee). If I had to do the 7:30 thing every day these days, I am pretty sure I would be jello.

Two more videos...

Week Two of Walking- a little "topply" because she can't decide between watching TV and walking. She's able to stand from sitting without assistance or something to pull up on. She is more routinely taking 12-17 steps without falling. She can also stop mid walk and start again to wait for me to move the ventilator to keep up with her.





Laughing at Elmo's World- you can hear the faint airy sound of her laugh past the deflated trach cuff and through the speech valve. There is this scene in one episode that just makes her bust a gut every time. :)

My 3 Year Old is FINALLY a WALKER!

Well, so far we are up to about 17 consecutive steps. Kiera is just making HUGE STRIDES! (Pun definitely intended). It's funny to see a 3 year old walk for the first time. Sometimes it looks like an adult would after a long rehabilitation, and other times she looks like a 3 year old trying to mimic a one year old. I will try to get another video today since she seems to improve every twelve hours. :)

Kiera has a doctor appointment today now that her antibiotics are done. Hopefully, we will get to lower her settings and get back on track with CPAP. I am waiting to hear if I will be offered the Manzano High School job I interviewed for on Wednesday while I am in the process of the State background check for the Youth Correctional Facility teaching job. We'll see what happens.

Best Video of Kiera Walking

Here is the best video of Kiera walking so far, except for the fact that the camera was sideways. :) I taped this today, and it is not an anomaly. This is how she walks most of the time, as long as an obstacle like her SAT cord or the extension cord for the vent doesn't get in her way. One time today she was walking with a play fork in each hand, and I thought, great, next she'll be running with scissors. :)