Kiera's day out...at the hospital...

Well, we took Kiera to see the pulmonologist today to see what we could do to help her feel better. We ended up tagging on the G-tube surgeons and the cardiologist for an echo cardiogram. So it was buy one, get two free? Nope, pretty sure they'll all bill. :) Anyway, it was a long but very productive day, and for Kiera being sick since Saturday, she certainly showed well. She was having a bit of trouble still and really needing her nebs. We even "borrowed" his nebulizer machine for her noon and 4pm nebs. Otherwise she seems significantly better than she was yesterday when I had to bag her 5 different times. We thought we were just going for one appointment, though, and even though we had 2 1/2 O2 tanks with us, we got a little nervous between our appointment ending at 12:30 and our impromtu for an echo at 2PM due to Kiera's increased O2 needs, so Jer ran home and refilled our portable tank. We also hadn't planned to be gone so long, so we missed a feeding since we usually don't take the feeding pump et al with us.

Kiera seems to be doing well with the plethora of changes. She's on xopenex for 3 days and a steroid course for 5 days. We dropped albuterol and atrovent during the xopenex but are continuing the mucomyst every other neb and restarted the Amakacin (antibiotic) neb for 28 days even though we've only been off about 2 weeks. Her g-tube granuloma probably needs surgical removal, but is not critical enought to warrent surgery, so will wait (and look gross and stain all her clothes) until she has a more pressing need for surgery. It's too bad, we could've done it in March during her bronch if it had been this bad and we'd known.

The worst part of our long day was the overlap of Kiera's nap time again. I got her to sleep in my arms in Glasser's office AND successfully transferred her sleeping to the stroller, but she woke up about 30 minutes later in the cafeteria. It was noisier than I expected.

We seemed to make a lot of progress today. Her echo was good; although, and interesting fact is that her heart is located lower in her chest than it should be, probably due to pressures breathing, but it doesn't seem to affect her heart function. Her right side is back to normal and there are no measurable signs of her pulmonary hypertension, so we are decreasing her viagra dose.

Since getting home, she napped an hour or so, and now she's playing quite happily with her doll house. She seems much happier...still not back to normal...but improving.

Thanks for the continued positive thoughts and prayers.

On a side note: dred lock boy on Idol better be voted off tomorrow. David Cook wasn't the best, but he sang Duran Duran, so I'm sold. :) I have to admit, I enojoyed David Archuleta, but my heart belongs to Cook. A little disturbed that he was born the year "Hungry Like the Wolf" was written though....
Therese