Sick at Thanksgiving.


Creating works of art one week later.She's a tough cookie.
Kiera is becoming aware of the pictures on the page and trying to color inside the lines. Very impressive. She will spend an hour at a time at the table coloring without interruption or direction.

A teensy weensy step in the feeding drama...

So I have had one of those "safe feeders" in my cabinet of failed attempts to get Kiera to eat which I haven't messed with in over a year, I suppose. Kiera has become quite adept at licking cheetos and crackers and will stick her fingers in my drink and lick them, so I thought we might revisit the safe feeder. For those who are unfamiliar this looks like a pacifier handle with a little bet basket to put food in that the child sucks on to strain the food into their mouth. I filled it with some of my very sweet mashed sweet potatoes from Thanksgiving, and she actually spent about 10 minutes licking it and mashing it on her face. She got a few good tastes out of it and now has a sweet potato covered face. Very cute, and it looks like I might be able to add this to her "feeding" repertoire such as it is.

Kiera home and back to the weaning process...

Sorry about the delay. Kiera ended up spending the whole Thanksgiving break in the PICU. We came home Sunday, and life was crazy. I steam cleaned my downstairs carpet, decorated, and did some Christmas shopping while she was enjoying her SPA RESORT stay at the hospital with the world's most expensive babysitter. Once home, we were still on nebulizers every 3 hours around the clock, and it took a few more days to get her back to a closer to normal state. She is on increased pressure support, so I am not sure how much of a set back that is in our weaning process. In fact, we have done no CPAP trials since home, but we follow up with the doc on Tuesday. I am in the crunch time teaching where kids suddenly panic and realize that the F they have had for the last 16 weeks may, in fact, be their permanent grade if they don't turn in their work, so every day has been hectic. I will be SOOOO glad in two weeks when I can finally take a break. Of course...then the restaurant will need me to see what I can get done on our books for taxes. Being supermom can definitely be wearing.

Therese

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.