Yet another grocery store clerk traumatized by Kiera Rose

So, I ventured out, and yet again discovered a weak link in our travel plans. :) I really needed to get Kiera's meds and groceries for Thanksgiving, but won't have nursing again till Monday. I had an "evil plan" that I could do it myself. Luckily due to a SNAFU and missed bus I ended up with a stepson assistant. Kiera with all her equipment pretty much fills a grocery cart. It was helpful to have The Boy to push another cart and fetch things. Kiera really enjoyed looking at everything. She was all smiles. She liked the ride in the cart, too.

So we did pretty well until we got near the end of our trip in the produce section. Kiera's vent circuit popped off and hit the ground just right so as to break off the sensor tube from the circuit leaving a tiny whole for lost pressure and volume. I sent The Boy out to the car to get the bagging tank just in case while the produce clerk helped me try to tape the broken piece onto her circuit to stop the leak. Voila! The Medical Tape Corollary to the Duct Tape method of repair was a success. Next time, I will carry a spare circuit in the car. I had no spares with me since this had never happened before. The clerk was very nice and also informed me of the location of a phone that can dial out. Apparently not all phones in the grocery store are capable of dialing out and the scanners cause dead zones for cells which is good to know in an emergency. Thank you, Don, at Smith's grocery store.

FYI- Kiera has started experimenting with standing without support. She tried it last night and tonight. She is so pleased with herself, and we clap together afterwards. Very cute. I think she is also cutting some 2 yr old molars and seems pretty bothered by it.

Therese

Indy Grill Dress Rehearsal

It was so much fun seeing our restaurant get born tonight. Thank you to everyone who helped test our crew out and see about working out kinks. It takes a lot of work to turn a restaurant into a finely tuned machine, so we appreciate your patience and support. I am so grateful for all the help we had cleaning, painting, wallpapering, decorating, refinishing, etc. I was also thrilled to have a nurse today to help so that Kiera could attend, but I could focus on all the guests a little better. I could definitely tell the difference between tonight and other times when we go out and I need to stay in tune with how she's doing better. She was so cute. She tasted a little berry mini-milkshake and seemed to like it. She also tried guacamole and sour cream. Not big on the sour cream but guac seemed tolerable. Kiera really seemed to enjoy herself, and liked all the lighting. Since I knew it might be a long evening I brought the pack n play, critical books, and a few toys, but my real guilty confession is that I brought the travel DVD player and her Elmo "What Makes Me Happy" DVD for the predictable evening meltdown. Of course, the DVD should be re-titled "What Makes Momma Happy." She camped out in the playpen and watched TV. I wonder if she sees the TV people from Poltregeist? She's her Daddy's girl. I recently discovered yesterday that the endearing sign I thought was Kiera reaching for mommy may in fact be a sign for the remote control. Hmmm. I admit defeat. The TV has won. "Go toward the light, Carol Ann." Or is it "DON'T go toward the light?" Darn it...I can't remember. Come eat lunch or dinner opening Monday 11am. November will be a special month for Presbyterian Hospital PICU and NICU staff showing badges. You're basically family, so come in and get your family discount during the month of November. Ask for Jerry. Cheers!

Here are some pics.

Independence Grill Opens Monday!

Yeah! Come visit our new restaurant, Independence Grill! We open Monday, although it is a soft opening. Our Grand Opening will come as soon as our liquor license comes through. In the meantime, we serve Jones sodas which are really fun and unique, and the food will blow you away. In addition, our place is so pretty. I love the mood and atmosphere. We can't wait to share it with you. We are located at 6910 Montgomery Blvd and the phone # is 837-BURG. Come get the Best Burger in town! Tell your friends!

Up Day...

Kiera is back on her rate of 16 with O2 at 3liters and still on 4 hour nebs and steroids. She made me laugh this morning at around 6am when she decided to be UP and stood up in her crib and started removing all the rail guards and tossing them. In the silhouette of the closet light, her hair was standing on end in a sort of "Flock of Seagulls" updo. When she does this, she often whines and grabs her suction catheter from the changing table to indicate that she would like some immediate suction assistance from her tired mother.

Another cute thing today...the nurse French braided her hair. It is so cute! Kiera has also developed a taste for Nacho Cheese Dorito's. She likes to lick the cheese off adult fingers. It's a start at least. She does open wide. :)

Therese

Up and Down, See Saw

I used to think of Kiera's health as a roller coaster ride, but sometimes it's much more like a see saw- so gradual change, just up and down.

She seemed to be improving on Monday and back to her rate of 16, O2 at 3liters, and 4 hour nebulizers. Then yesterday she was pretty sick, back on 3 hours nebs, rate back up to 20, O2 at 4liters. Today, so far, she's back down to a rate of 18, with 4 hour nebs and O2 at 3 liters.
This, of course, is in addition to some diarrhea and diaper rash and lots of secretions to suction.
But, I hate to commit, she seems a little better today.

I am looking forward to more nursing this afternoon, Thursday, and Friday, so I will be able to help finish setting up our new restaurant to open on Monday! Yeah! (on the nurse and the opening.) Our restaurant is Independence Grill at Lousiana and Montgomery (6910 Montgomery). We will be open daily for lunch and dinner, and the restaurant website is http://ABQburger.com. I hope you will all come. The menu is fantastic featuring American Kobe beef burgers at a great price! I am totally in love right now with our prime rib with our chef's special green chile en jous. And for dessert lovers, I picked them personally with all my sweet teeth. (Just ask my dentist)

I also want to thank my guardian angel mom, Shannon, for the video baby monitor. Once Kiera is well, I will start trying to sleep in our bedroom instead of Kiera's and see how it goes. It's all hooked up, and all I need to do is get Apria to send me a louder SAT monitor.

Love,
Therese

So far so good...we've kept her home

Another quickie: Kiera's down to neb every 3 hours instead of every hour like yesterday, and her O2 is down to 3-4 liters. I dropped her rate to 22 (I had had to increase it from 16 to 30 to get her through being sick and keep her home). Now she's getting more puffs of Symbicort, still getting the steroids, atrovent is up to every 6 hours instead of every 8, and we dropped her mucomyst. She's still pretty junky(i.e. phlegm in trach tube) and gets kind of lethargic when she's due for Atrovent, but sheactually sounded more clear last night at bedtime than she had.

This all happened with very poor timing. She just changed diets Friday after her GI appointment. She has had some funky GI effects that I think are from the diet change, but I think the respiratory fallout is a separate thing from a virus probably. She's been gaggy because I think it takes her longer to process the new food, but she could also be gaggy because of the "junk in her trunk" (again- phlegm in her trach). We also got to just start her Vest treatments up again on Friday because we had been off for 2 weeks for her to heal from surgery. Therefore, it's hard to tell if the junk is from no Vest treatments or a virus, although the runny nose leads me in the virus direction.

Thank you for joining me for amateur medicine 101. :)
Gotta go...Kiera's "calling."
Therese

Oh-P.S.- found the camera under her other equipment bags. It was here the whole time, and we could've gotten more Halloween pics. I may just have to dress her up and get a few more. :)

Kiera' caught a cold at the doctor's office

Kiera must have a cold, and it's been throwing her for a loop. I've been giving her nebs just about every hour since yesterday afternoon, and we started steroids this morning. It's been a long night. Hopefully we can keep her out of the hospital today. We'll see.

Therese

Kiera playing Rock Band and using grocery cart "walker"

This isn't how she uses the cart loaded up, but we were just practicing.


Braving a transfer from the cart to the drum set.


Kiera likes to Jam! She uses chopsticks because there are now little teeth marks in our drumsticks. We had to give her decoys.


She is totally a hair band rocker chic! She loves to watch us play and join in. Sometimes she drums on her tin (leftover from Christmas popcorn) or plays her piano, tambourine, or maracas.

Can you sign, "Drama Queen?"

Our family had some drama tonight at an un-named alternative grocery store which I think has
pretty much scared the crap out of a whole bunch of grocers. Jer was
working today, and he had previously asked them about getting one of
their old gray kiddie shopping carts for Kiera to use with her
ventilator to facilitate learning to walk. They were going to sell me
one for $40 because they had upgraded to new prettier ones, and I
guess they cost $120 new. I have no nursing lately, so I was faced
with the option of waiting till Tuesday when I have a nurse, or
packing Kiera up with my 2 teenagers and trekking to the store. I
rarely do this since they are not well versed on how to help in an
emergency while we are driving, so I would have to pull over for
anything more serious than reconnecting her ventilator to her trach.

Anyway, I risked it and took her out thinking she has been doing
really well, and we wouldn't have any problems. You can probably
foresee that Murphy's Law will again rear its ugly head. Part of me
thought that having Kiera with me might charm them down on their price,
too. Who could say "no" to that smile?

Anyway, I guess Kiera had a huge plug she was trying to cough up, and
she started desatting right after we got in the store to look at the
carts. So here we are at a booth at the front of the store by the
registers. I suctioned Kiera 3 times, bumped her O2, took off her shoe
to make sure the SAT probe was reading accurately, and finally sent my
oldest to the car for the bagging tank. Now we are bagging her in the
store in front of every shopper who's checking out. I had one stepson
bagging her while I did a ventilator check, and no matter what I did
(changing tanks on the vent, changing tubing, etc) I could not get her
SAT's to stay up on the ventilator. So I gave her a Xopenex inhaler
treatment which didn't seem to help much and kept bagging while one of
the boys called dad to come help us bag her all the way home. I didn't
feel safe about driving with them bagging.

So, while waiting for daddy, I still had to page the manager back to us
to discuss the shopping cart purchase. Interesting enough, the white
look on his face as I explained that we were having a minor medical
emergency, that my husband was coming, that no, we did not need him to
call 911 but that I had a phone if I decided to go that route, and
what I'd really like to decide is whether he'd like a check or charge
card for the kiddie cart caused him to allow us to just take the cart
free of charge. :) I think what he wanted to have follow was, "Just
as long as you don't come back to freak out my peace loving customers,
lady."

So all in all, the trip was a success. We are back home on the home
ventilator having gotten some thick mucous out and run some extra
nebs, and she seems much better. She still has an elevated heart rate and temp, but is getting feisty again. I think she just didn't take kindly
to having been woken up from a nap for this outing. Of course, I
wasn't too keen on being up with her from 1:40-5am this morning
either...which is what I told her. I think we have an understanding. :)

Therese