Some pics of Kiera from before her latest sleeping spell. Just a bit to remember what she's like awake.

First two teeth.

Kiera loves balloons.

Getting better with baths.

Kiera moved herself sideways and is pleased.

I can hold my paci (with my giraffe's help)

I'm sitting up (sort of). I'm such a big girl.

I love my walker.

Sleeping it off...

Today was an eventful day for Kiera, but she is doing fine right now. She has been having trouble with her stomach prolapsing through her G-tube stoma. It has progressively gotten worse, and today the doctors decided it finally warranted doing something. Fun part is that the experts have never seen this before. Leave it to Kiera! She likes to make roads where there are none. They sedated and paralyzed Kiera and will leave her that way till Monday. The surgeon pushed the stomach tissue back in her tummy and adjusted the balloon to try to keep the g-tube close to her tummy. She will heal while she's sedated and paralyzed so she doesn't push it out again. We will have to see if that is enough to keep it in or if they will have to stitch it tighter. She may push it back out when she wakes up. We'll see. In the meantime, she sleeps.

It was a sad day in the PICU, however. Her fellow patient, who was born one week before her and had very similar problems to Kiera, passed away early this morning during a brady episode. He was a sweet baby. We are so sad for his family, and we are probably suffering some kind of survivor syndrome. It is impossible not to realize that it could have been Kiera. It could still BE Kiera. Things turn on a dime, and we have to enjoy every minute we have with Kiera so that if we come to the end, we have no regrets. Please pray for Kiera, that she starts improving and gets closer to coming home.

Love,
Therese

Had our meeting...

No earth shattering news that we didn't know already from Cincinnati. Kiera's having a rough day today. She is working hard to breath and had a fever of 104.4. We are ordering an even longer trach tube in an attempt to get Kiera's airway under control. We need to have her "less unstable" or more predictably unstable. She responds well to her current nebulizer treatments but starts to have problems about 2 hours after receiving them. They had been dropped back to every 4 hours, but are now being given every 3 hours again. We'll see if they decide to go to every 2 as I suggested.

For now...in case you mistakenly think you should ask...Kiera will be in the hospital for a LONG TIME. If this is not clear enough, envision the possibility of her 2nd birthday at Rachel's Courtyard. For sure, no one is coming home before she's at least on an LTV home vent. That's far off right now. Maybe she'll come home sooner, and we can be pleasantly surprised. We appreciate all the well wishes and inquiries as to her homecoming, but truly, please don't ask. I think I had a dream last night where I was still explaining to someone that, "No, she's not home yet." Believe me, when she's home, you'll know.

Thanks,
Therese

Update...no creative title

Kiera has been having up and down days lately. It's been rough. She has started a tributaline nebulizer instead of her albuturol (sp?), and it seems to be helping. She seems better today than she was this weekend (which was not good). She's smiling and playing. She likes to dance (or get wiggled and bounced all over by mommy and daddy while music is playing).

She tasted a grape popsicle today. It was so cute. She grabbed it with her hands and took no notice of the cold. Then she enjoyed licking her fingers. She didn't know what to think of the popsicle on her lips until mommy took a lick and showed her. Then Kiera opened her mouth wide and stuck her tongue out. She is so smart and observes everything.

We are waiting on Dr. Kanamori to report back from a conference this week at Cincinnati Children's Hospital with a bunch of ENT experts regarding Kiera's Tracheal Malacia (floppy airway), and bronchis suis. It's starting to feel (after 13 months) that she's never coming home. We have another care conference for her with all the doctors next Monday. Her G-J tube has prolapsed and looks nasty, but there isn't much we can do about it. It's the least of her problems anyway. Can you tell I'm drained?

Love,Therese

State Fair Time:Ride the Kiera Coaster!

Kiera did seemingly okay with the longer trach tube with periodic spells where the tube would become occluded by her tracheal malasia. Her spells increased, and we ended up bagging her to get her through one on Tuesday 9/11. So we decided to put her previous shorter trach back in, and she seemed to improve immediately. Now she has the shorter trach in and has periodic spells of increased work of breathing from the tracheal malasia; however, her trach does not become occluded. So far she gets through the spells in about 5 minutes with increased oxygen and no bagging. I am on tenderhooks waiting for the axe to fall and for her spells to get worse like they were before the longer trach fiasco. The Cincinnati conference regarding Kiera's airway should be happening tomorrow; although I don't know when we'll hear back.

We are definitely feeling stuck between a trach and a floppy airway.

When Kiera's well...she is a joy! She's all smiles and loves to play with her toys. She is working on 2 more teeth, having cut 6 already. She's working on sitting without support, but has a long way to go. She has lost some ground over the last few weeks with her developmental progress. I took her walker to the hospital with the wheels off, and she has a wonderful time in it.

Say your prayers. She needs them.

Love,
Therese

Okay, do over...

I'll be quick today. I'm tired.

We're trying the longer trach again. The doctors decided that the problem before was that the trach became misplaced. We don't know how, but it has been put back in and positioned correctly. Hopefully, it was a fluke and won't happen again.

The docs lifted her paralytic today. She gets very agitated as she regains her muscle control, and I calmed her down and rocked her to sleep tonight. So far, so good. I can't say what this means or how long till...whatever.

Today she's doing a little better. Now, we wait. Tomorrow is another day.

Love,
Therese

Kiera's Laborious Labor Day Weekend

Kiera had another low day, but it's hopefully looking up for tomorrow. She had a longer trach put in during a bronchoscopy Friday afternoon in order to bypass her bronchus suis. She was doing pretty well, although we didn't see many immediate positive effects like we'd hoped. Then early Sunday morning (4am ish) she had a major set back in which she was "un-baggable" and hard to ventilate. She had to be paralyzed and sedated (yet again). Once the muscle relaxants took effect she was able to be ventilated, and they brought her O2 Sats and heart rate back up to acceptable levels. Then today, while still under heavy sedation, Kiera had another bronchoscopy, and it was determined that she would be better off going back to the previous shorter trach tube. After they changed the tube, her PEAK pressures in her lungs came back down to a better level in the 20's and 30's rather than the too high levels of 50's and 60's they had reached.

Kiera is currently still paralyzed and sedated. Maybe tomorrow the doctors will lift the sedatives and see how she does. Jer and I have spent the weekend pretty numb and scared. Kiera was pretty unstable yesterday after having been completely charming and playful on Saturday, but it appears it may have been entirely attributed to the longer trach tube. On a bizarre plus side, it DOES seem that 2 days of the longer trach DID reduce the size and irritation of her bronchus suis. It just doesn't seem to have solved anything. So.... we're back to trying to ween and wait.

Love,
Therese