Thursday, April 30, 2009

My future's so bright...I gotta wear shades!

This is pretty much the first time I have been able to get Kiera to leave a pair of sunglasses on. This pair was a gift from my Aunt Meg over a year ago. Kiera has been playing with the nurses' sunglasses and with daddy's hat, and has been getting more used to the idea of things on her head. I think she likes these glasses because they FIT perfectly. She kept looking around the room at things like she was exploring how everything looked different through shades.

Saturday, April 25, 2009

Guess which brother was watching Kiera while the TV was on...

I really LOVE this dress she has only worn once. I hope the marker she ate washes out. :(

First time on the Big Toy! (and Descartes gets a shave)

Look, hair!

I could've sworn this dog was bigger. He's a shadow of himself.

I love this park! It's 100% ADA accessible. Kiera got to do everything the other kids could do.(except play in the sand...we don't do sand)

Everyone likes Kiera's stickers on her stroller...that is until I tell them how she earns them. :)

It's my friend, Ashlyn's, birthday party!

And her sister, my friend, Peyton's, birthday!

My Mommy and I wore coordinating flower dresses for the flower theme.

My first time on the Big Toy because my stroller and medical equipment can access it with me! I'm big enough that I want to walk by myself.

I get a kick out of driving!

Tuesday, April 14, 2009

Current Pics

These are all post-discharge photos from this weekend. I'll try to download the pic from my phone of Kiera on the anesthesia ventilator March 14th to show before and after.

Addendum: 4/19- Couldn't get the pics off my phone but no matter. I just had to say...take a look at Easter pics from my entries back in March 2008! I was just looking at them and seeing how INCREDIBLY FAR Kiera has come since Easter last year! WOW! Sometimes it's hard for me to notice the changes since I see her everyday. I still see my little baby when I look at her, and she is such a big girl! Now if we could just ditch "Vinny." (Or should we call the vent "Sven?")

Monday, April 13, 2009

Kiera is so HAPPY to be home!

Kiera has just been smiling from ear to ear all weekend. She smiles great big smiles and signs, "I love you" constantly when she's not blowing kisses. Last night she sang "Twinkle, Twinkle" with me. She fills in the blanks between verses. i.e. "Twinkle, twinkle, little _____," and Kiera says, "ahhh." That's the best representation I can make for her singing. It's about the only sound she makes by pushing air around the cuff of her trach tube, but it's in perfect pitch! Maybe she's building up her diaphragm breathing to be a bassoonist or opera singer? :) "Maaa," and recently, "Baaa," are Mommy and Daddy. (At least that's what WE hear.)

Kiera is doing great and only on nebs every 6 hours with an extra before her inhaled Colistin antibiotic twice a day. It is incredible to believe that I was worried she might die barely a month ago. In fact, now that I think about it, it was the 14th when we had to put her in her coma with a collapsed lung. What a TROOPER! She's practically back to normal aside from some muscle weakness that is coming back gradually. Last night she was sitting at her picnic table reading a book, and she just looked like nothing unusual had happened at all last month. Today, she walked with her walker to my office from the family room (while I pushed the ventilator) so we could have an Easter egg hunt! She wasn't even standing more than a few minutes just 3 days ago!

I'll try to upload Easter pics just as soon as I figure out this camera my sister lent me. Have a great day, and if you live in Albuquerque area, we hope to see you at the Albuquerque Tea Party on Tax Day (Wednesday) from 4-7PM at Independence Grill (Our Place).

Friday, April 10, 2009

Kiera came home YESTERDAY!

We are so glad to be home! Kiera fell asleep on the floor within 30 minutes in the door! She seems a little shell shocked almost. It was tough getting used to the alarms again last night. Jer and I have never been so happy to get so little sleep. She will definitely need help getting back to walking and cruising again. All we need to do for motivation is place the remote control in different parts of the living room as a lure. I also have to get used to the increased med schedule that we had gotten away from. All in all, she's doing pretty well I think. She was all smiles doing crazy eights in her stroller with Daddy on the way out of the PICU, and we are again indebted to the Presbyterian PICU staff for having our Kiera here with us and HOME! Happy Easter!

Monday, April 6, 2009

Hooray! Kiera did "Itsy Bitsy" for the first time since coma-land!

So, I have yet again saved the day by micro-managing Kiera's hospital care and brought to the doc's attention that the "set-backs" they were witnessing in the last 2 days were from broncho-spasms caused by her colistin neb in too close proximity to her mucomyst neb. We'll test it this morning by holding the mucomyst neb. I am stressing out trying to get them to discharge her. The doctor is not as familiar with her (and me) as the rest, and we have both become "princesses" used to getting attention. Hopefully, she will see the big change tomorrow and work with me on getting Kiera home in tim for Easter.

Finally, this evening, 4 hours after her colistin induced broncho-spasm, she is sitting up and did the Itsy Bitsy Spider fingerplay for the first (and second) time since waking from her coma. She's playing with her stacking cups right now and stacked them 9 high (the 10th is too tall from sitting), and we had a blast reading her new favorite Beauty and the Beast book. At the end, when the Beast has turned back to a prince, the picture of the prince has the long blond hair with a "halo" of sorts over his head, and she signed "hat" or "hair" and then "love." She totally GETS this plot line. She laughed again at the movie today during the library scene and Belle's father's invention exploding AND she cries when Belle's daddy leaves in the wagon! Honestly, it seems like her muscle memory just came back. She's still a little awkward and weak, but it's impressive.

A funny new trick she discovered while we were reading her book, "Miss Spider's Tea Party," is that she thinks it's hilarious to turn the pages as fast as she can and make me read really fast. This speed reading page turning may have helped her to discover that she's stronger than she thought she was. Right now she's quite happily chewing on her cloth book.

Looking at her right now, I think I should be able to convince someone to let me spring her by Friday!

Almost there....

We're still working on getting Kiera home. Her pulmonary hypertension isn't quite under control yet. She has another echo scheduled today and is currently on an IV and an inhaled antibiotic for a presumed pneumonia, and she is still on nebs every TWO hours which would be a challenge to keep up at home for too long. Hopefully, we can get her situated and home by Wednesday. I've been able to take her for wagon rides around the unit, and her methadone is being slowly weaned which is helping her be more interactive.

She is so weak from the atrophy of almost two weeks of sedation that she can barely sit up by herself. It's frustrating to me, so I imagine it's ten times that for Kiera. Hopefully, with therapy, she can get back to the walking and crawling that she was so good at before this set back. She's also lost about 2 kilos since admission. I don't know how much of that is just muscle mass or what, but she's a little flabby looking.

On a lighter note: Kiera has absolutely fallen in love with the Disney movie, Beauty and the Beast. She was so funny the other day (although upon reflection this event may have been enhance by her methadone dose)! Anyway, she totally interacts with this movie. She laughs when Belle goes into the library. I think she's thinking, "Books! I LOVE books!" Then the best part is her reaction to the scene where Belle starts talking to the wardrobe, Mrs. Potts, and Chip. When Chip talks to her while she's drinking, Kiera just ROLLS OVER LAUGHING. She was laughing so hard, tears were coming. She fell over once. It was hilarious! She was laughing as hard as I do when I watch Jim Gaffigan (who is HILARIOUS by the way). Seeing her laugh like that was really the highlight of this visit. We hadn't watched B & B much at home since I have it on VHS and my VCR is fritzy. So she's been watching it multiple times a day at the hospital.

Say some prayers for a Wednesday discharge. Have a blessed Easter everyone!

Wednesday, April 1, 2009

Back on her LTV

Kiera finished her Terbutaline drip yesterday and is off all IV drugs right now. They put her back on the LTV (the home vent). She's still huffing and puffing a bit, and her O2 requirement is still around 45%. the highest we can go at home is 44%, and we'd be zipping through O2 fast with no room for adjustment if she had a brocho-spasm, so we really need her down to 36% continuously with only rescue bumps to 40 and 44% in order to bring her home comfortably. I am pushing the doctors to get her well as soon as possible because she is clearly depressed being in the hospital, and I think it will be much better for her to get home ASAP! I can't wait to see her face when we finally get her in her stroller. I may bug the docs to let us wheel her around in the wagon this afternoon, although because she is MRSA positive, she tends to get relegated to her room because of infection control. (I will try not to mention the irony of the fact that she caught the flu IN the hospital which did way more damage to her than her MRSA ever did... who am I kidding...I'll probably mention it.)

Wish us luck. I think it would do her good to get a wagon ride.