A Different Valentine Celebration

I recently read a wonderful article about the beauty of noticing opportunities to lift those around you and gifting service above "things" at Valentine's Day. I loved this article, click here to read it! Great ideas about how to shift our concept of the holiday to a celebration devoted to kindness. I've been trying to do that everywhere I can here in the hospital, and it's really made for some wonderful experiences.  Then, when I learned yesterday afternoon that Justin had sent me Valentine flowers, I was so excited! What a huge treat! But my initial joy quickly turned to sadness because flowers aren't allowed in the ICU rooms. And then, to my surprise the most beautiful thing happened. I went to the desk to accept the package, and about 12 nurses were there waiting to ooh and ahh as I opened the box. It was a DIY box of wholesale multicolor roses with an empty vase, and soon I was preparing the arrangement with all of my latent florist zeal. One nurse offered to run fill the vase with water, another grabbed me the sharpest pair of scissors to trim the stems, and we all happily chatted as I handled the flowers. The arrangement turned out gorgeous, and they put it on prominent display on the desk. Now everyone passing through those ICU doors, with whatever stress they're holding, receives a moment of color and a breath of spring. My husband's beautiful gift suddenly became a blessing for everyone, and that is bringing me even more joy than if we'd been able to receive it in our room at the beginning. The photos really don't do the flowers justice. Thank you Justin, more than I can say!

February 12, 2016

Well, with the morphine and Versed done, life got less fun yesterday for my little love. Lots of discomfort, grumpiness and malaise. Tylenol and Zofran are our friends. Haven't been able to get her interested in doing anything except tv, not even opening our first mail from home! (Right after this nap.) She won't stand or sit unassisted, not many smiles. But on the plus side, her voice is back! It's a huge help to have her articulate what's going on. Really looking forward to our first visitors this afternoon, when Anna and Tim are planning to drive up from SE Mass, and cheering on our "runner" Valerie Mccormick who's doing her first half marathon today for Audrey in Seattle! Thanks for your sweet package Mom and Justin, I can't wait to open it!

One of her rare smiles.  She looks so cute in the fun hospital gowns from Amy and Aliyah.  Thank you so much! Love you guys!

February 11, 2016

Three things that make me smile today: 

1. Real, healing, deep non-drug sleep. 
2. Her arm restraints in the trash.
3. The very lovely "clarification sketch" from the surgery dept as they answered my questions about exactly what was done to her lungs and what it means for the future. That'll help me explain things to Justin.

 Real sleep.  It's so beautiful.

 Sayonara, arm restraints!  Seeing those in the trash was a glorious thing.

"Respire, avale, beauté" ink on paper, 200k. 

Newest gallery acquisition.

Little Things

Today was full of little things that meant a lot: Ditched the chest tube, made the beds, wrote Valentine cards, consulted with doctors and learned they're planning the esophagram Tuesday, walked all the way out of the hospital to the mailbox and convenience store, washed a week worth of laundry (one load), did a random act of kindness, Skyped with home, had an enormously healing chat with Susan the social worker, was delighted to run into and be given a sticker by little Twisha Makwana, and spent hours upon hours with cartoons and snuggles holding my little girl for the first time since surgery, as she smiled and giggled softly, sometimes sweating and trembling with morphine withdrawals, often cuddling closer into me. I'm dropping into exhausted sleep feeling full of joy and purpose and gratitude tonight.

When One Centimeter Makes All the Difference

I'm so happy to report that since they've pulled the vent back a centimeter, she hasn't had any more dying spells with those insane single digit sats. She's still been mad as a hornet when she comes to that near-awake stage, thrashing and fighting to get the tubes out, but her lowest sat was in the 70s even when she held her breath. They switched her from morphine/midaz to propofol and hoping she feels better on this. Best news is they're finally ready to extubate! I'd be happy dancing more but she still has to stay pretty asleep until she stops throwing "get me out of here! " fits. I miss my vibrant girl so much! And the two friend visits I'd looked forward to this week, for different reasons each just canceled. I hadn't realized how much I was looking forward to their coming, and even though I've tried to take care of myself today, even got a free chair massage at the parent center, after I got those texts from my friends back to back I had an attack of intense claustrophobia and felt like I could hardly breathe. I'd never make it as a spaceship crew member or submarine sailor. Everywhere I look the environment is controlled, buildings and concrete! I need fresh air and I miss the mountain views out the windows at Primary. There is one gorgeous oasis, a garden at the center of the hospital, where there are trees and grass (snow right now) and I went there and had to walk around for a few minutes to breathe and calm down the sensation of living in a box. Ironically, the hospital plans to build on the garden and so far efforts to save it have fallen on deaf ears. Missing people and wide open spaces right now, and very thankful for techno means of connecting to family, friends and all of you!

Annnnnnd we're EXTUBATED!!!!!!!

WE HAVE SMILES!!!

Chest tube to come out tomorrow!!!

Oh yeah, life is getting better.

Give Her an Inch

Lots more drama overnight, many more purple parties, but it made me feel good that I was able to calm her and prevent a couple of them. She's been keeping everyone on their toes and her night nurse Cindy is basically my hero. She tried a ton of different little things to try to help Audrey be more comfortable and figure out what was causing this.

The Dream Team rounded this morning and I felt like a fangirl seeing all those fantastic people in one place. Then her surgeon, Dr Jennings, did a bedside bronchoscope in our ICU room and they welcomed me to stay and watch. It was extraordinary to see the inside of her living airways, and I'm thrilled to report she looks gorgeous inside, no leaks or problems from the surgery. He said her breathing tube was in a little too deep, and suggested it might have been pressing on her trachea when her head moved a certain way and triggering the panic response. They pulled it out a cm and retaped, and now we're waiting to see what happens. No problems so far since, but she hasn't fully come out of the paralytics yet since this morning. Waiting anxiously to see her little eyes and head moving again, to see if we found the culprit at last. Guess you could say I'm holding my breath.

Party Girl

Audrey threw 3 or 4 more purple parties with guests and balloons overnight, so I stayed close this morning instead of leaving the hospital for church as planned. Her panic spells are tied to her periodic suctionings, so the team has developed an effective system of giving extra calming meds just prior to a suction and "bagging"--manual breathing support with a special balloon--through the procedure. She's on some calming meds all the time right now and they are helping a lot, but basically she just wants that vent out, yet isn't quite ready physically. They're thinking Monday or Tuesday right now for extubation. She also spiked a fever of 101 in the night and there was talk of adding back antibiotics, but the fever came right down with Tylenol and hasn't returned, so they're thinking it was inflammation instead of infection. I'm so impressed with her nurses. Cindy, her night nurse, was so incredibly sweet and gentle with her! She spoke so kindly to her whenever Audrey awoke and would even ask her questions, and I was so happy to see Audrey answer with head shakes and nods. She's still pretty out of it, but every now and then I get to see her eyes, and love that. Thankful for fantastic nurses and everyone else taking great care of her.