Sunday, May 31, 2009

Kiera still sensitive to unison sound...

So I took Kiera to my friend's son's 2nd birthday party yesterday. In addition to her skipping her nap, she was pretty anti-social. She much preferred to read her book and play by herself in the playhouse. I took her in the house for story and game time with the hired clown. She was fine for a bit, but the clown started a game with balls on a blanket where every kid grabs a corner of the blanket and they raise and lower it to make the balls go everywhere. Kiera seemed to like this till everyone starting saying, "Whooo..." in unison. Then she freaked out and was crying, so rather than torture her, I took her back outside for time in the playhouse.

She did make some headway in the TASTING department. She decided to taste each and every rock in the landscaping around the playhouse. hmmm.... She also took several sips of water from a water bottle with a twist spout. (apparently available at Target). We'll have to try that for feeding therapy. Maybe we have had a breakthrough. Rocks and Water. She was also quite happy to sit diaper butt and bare legged on the rocks; however, she flipped out when I sat her on the grass and did kind of a v-sit to keep her legs off the grass, much like one would do at the beach on hot sand. Kiera was pretty tired having avoided her scheduled nap, so she lay down on a blanket for a while.

Then when it came time to sing Happy Birthday (outside) Kiera started crying again at the unison noise. Poor thing couldn't catch a break. This sensory sensitivity is really a big pain in the butt. I think the most fun she had was with the helium balloon and the rock licking. She played catch with the balloon with Daddy when we got home, and really enjoyed it till she suddenly realized she was exhausted and crashed on my lap.

All in all, it was a fun day but lots of work.

Sunday, May 24, 2009

Much improved...

Kiera is much improved after almost a week of steroids and antibiotics. Of course, she's getting a little puffy now. We may even venture out to the butterfly pavilion tomorrow. I hope so. I'm going stir crazy...especially with the rain the last few days and no relief since Thursday to get me out of the house. The big epiphany is that I think her ventilator heater was malfunctioning, and it's possible that she was getting cold air in her lungs for a few days even though the heater was reading at a higher temp so maybe that is what got her sick? We changed out the temp probe and heater wire Friday, and that seems to have done the trick. She's back down on 3 liters (from 4) of O2, and can probably go to 2 1/2 today. I'll try when she naps. We nudged her rate back to 14 (we had bumped it just a little to 16 when she was sick in a desperate attempt to try everything). She's back on full feedings, although we're running them a little slower but titrating up to our regular rate. I may even be able to stretch her nebs to 6 hours. I'm attempting right now, so we'll see how it goes. The last few nights of 4 hours nebs caught me out of practice. All in all, this was just a brief sickness, but we're back on track.

Have a great Memorial Day, and Eat at Independence Grill! (Montgomery and Louisiana)

Wednesday, May 20, 2009

A Post for the Benefit of Dr. Crow

Okay, Miss Monitoring Kiera's Blog and her Mommy's Actions Daily,
I was wondering how Kiera got so sick in just one day, and now I realize it is because Dr. Crow was bugged that I wasn't posting more frequently. I wasn't posting much since we've basically been staying home in order to avoid getting sick. (Oh...and most spare time has been spent running business and getting high schoolers prepped for finals) Now that she's sick...I have a reason to post...and, therefore, please Dr. Crow. Happy? :) Of course, she would have known Kiera was sick last night if she had accepted my facebook friend any good doctor would for her patient/stalker. :)

So, Kiera went from stellar, better than she's ever been for a straight month, to pretty darn sick overnight. She was a little junky Monday night after throwing up on Sunday for the nurse. I'm wondering if she aspirated. Otherwise, she really hadn't done anything to be exposed to anything other than play outside in the backyard for an hour on Sunday and play with her cousins here at home Sunday night. Drat! Anyway, she spent the day Tuesday with a running like a faucet runny nose and needing a lot of trach suctioning which then added a cough later in the afternoon followed by a vomitting spell over about a hour and a low temp. Then early this morning (4AM) she spiked another temp (about 100 on my temporal themometer). I gave her ibuprofan and an extra neb because her lungs sounded pretty diminished. The temp climbed to 103 rectally by 7 am when we gave tylenol and called the Big Gun (her pulomonolgist), begged his forgiveness for the playful message I left him Monday about how well she was doing and "demanding" and ventilator rate deduction much like one might leave a ransom message, and now she is back on a steroid course and inhaled antibiotics, along with more frequent nebs every 4 hours.

This post should now appease Dr. Crow's curiousity, and I expect that if we were to end up admitting her or something, that I would be able to assume that the PICU would no longer need to take a medical history or admission report or whatever they call it, but just refer to my blog and save us both time. I should just be able to call, say "hi, we're on our way," and the PICU will respond, "Yes, Kiera's suite is ready and waiting. We read the update." :)

Saturday, May 16, 2009

Counting Down 164 days....

So, here I sit, a math geek, with nothing better to do. I realized during the last hospital admission that we have yet to have had Kiera home more days than she has been in the hospital. The hospital still owns controlling shares in our baby girl. For so many, this calculation of the day their baby has been home longer than they were in the hospital is much simpler. However, with 7 readmissions in addition to the initial 514 day stay, this computation required some of my higher mathematics training. (This...children is why you need math)

Anyway, I know you're waiting with baited breath to find out what I've concluded...

Kiera's total days spent "inpatient" in NICU or PICU(this does not include regular doctor's visits or urgent care) is at present 585 days. She spent 319 days at home in 2008 and to date has had 102 days at home in 2009, resulting in total days at home of 421 so far. (BTW...her last stay in March totaled 34 days while total days in 2008 were 46 combined...eek).

So barring any further admissions, we are counting down the next 164 days. I have calculated that Kiera's 50/50 day would be October 27th; therefore, we will have controlling interest in Kiera the following day, October 28th, 2009 (Incidentally my brother's birthday and 3 days before Kiera's original due date). A PARTY WILL DEFINITELY BE IN ORDER. I will keep the date of the party updated as unexpected hospital visits occur and in case anyone would like to plan to come. I may have to make adjustments in that it will be heading into cold and flu season, but this may be a bigger event than birthdays or even her wedding! For will be a fun anniversary to celebrate!