The Color Purple

Well, I wish I could say that our first attempt at lifting the paralytic went swimmingly. Instead, after a few moments of taking it all in my sweet and sassy princess opted to express that she was not amused by holding her breath against the pull of the vent, donning an impressive shade of purple and some single digit sats. But hey, she knows how to throw a great spur-of-the-moment party! There were plenty of guests, balloons, and stimulating conversation. As the boluses kicked in, sats rose and she slipped into a comfortable slumber, I reminded her that her favorite color isn't purple, it's pink. It really does look better on her. A few useless-feeling minutes later I was sitting in the cafeteria trying to convince myself again that food is good, listening to Pandora, and humming along to "Every breath you take, I'll be watching you."

Patience

A Few Fun Facts From Friday:

1. The nurses and doctors taking care of Audrey here are hands down amazing. She's doing well, spent the day deep under, and outside of virtual land my key accomplishment for the day was more or less eating twice and getting a shower. The worst thing about being in the ICU is that you have to go to a common room to eat, and you have to go to the far end of the hospital to take a shower. The BEST thing about being in the ICU, at least for anxious introvert writer types, is that you have to go to a common room to eat and go to the far end of the hospital to take a shower, after checking in at the parent center to get a key. Turns out, in person human interaction with strangers is a good thing.

2. Our day nurse was an intelligent blond woman named Susannah. The wonderful social worker who stopped by for a great 30-minute conversation was named Susan, also blond. The chaplain whose visit I missed during soup was named.... Susan. I was feeling the solidarity.

3. Two cool people I met yesterday while venturing into the world beyond our room were other moms whose daughters are in the ICU. The first's beautiful one-year-old was newly diagnosed with a very similar rare condition to the friend I wrote about last week who moved to Oregon to continue the miraculously successful treatment of her daughter's pituitary condition with cannabis oil. I made sure the two of them got in touch, and she told me lots of great details about the huge annual Salem Haunted Happenings event just north of Boston at Halloween, where the original Ghostbusters car is a key part of the parade. She ain't afraid of no ghost.

4. I met the second mom during an awkward moment. I was trying not to look too ridiculous while endeavoring to catch a whiff of each of the 6 soup flavors in the cafeteria, and kinda failing. I told her that each one I smelled was my new favorite. (The fact that I'd just had a major question answered by the EA team--whether they suspected the weird blister in Audrey's esophagus could have been precancerous, they didn't--miiight have had something to do with my newfound enjoyment of those smells.) The mom laughed and noticed that my name tag said we were both in the ICU, so she invited me to sit with her. Her teen daughter has had numerous profound complications following a years-ago liver transplant, so we sat chatting about how her home in Maine was just 2 hours drive away (took me much longer than that to drive home to New Bedford, Mass after appointments the day before surgery), and other little things like liver cancer and the longest-in-the-country life expectancy of Maine residents. It was really nice talking with her, and while we sat enjoying our lemon ginger chicken noodle soup, her daughter's liver specialist happened to walk by on his way to get lunch--probably soup--and casually told her that she'd just been moved into first position on the waiting list for a new liver transplant.

5. After we parted I realized that one of the moms I met is in Room 8, the other in 18, while we're in 28. That made me second guess my memory but I'm pretty sure. Funny, huh?

Audrey continues to heal under the paralytics. They're going to try lifting them a bit today to see if she'll keep her chin down per Dr J's orders, but might put her back on if not. I, on the other hand, am doing pretty well at keeping my chin UP. Missing my vibrant silly girl but being patient. Your texts, messages, calls, comments and prayers really mean the world. Thanks.

Tenderness

Well, there's no doubt in my mind now that Audrey did indeed recognize my voice. When I came back from the common room last night after talking on the phone with Justin, the nurse and I talked for a few minutes and suddenly the nurse exclaimed, "she's awake!" Sure enough, fighting through the paralytic drugs Audrey opened her eyes and stared right at her, then at me. She locked eyes with me and tried to move, and when she couldn't, she trembled all over and a giant tear welled up in her eye, so I put my hand on her head and my face close to hers and explained to her that I knew she couldn't move and how scary that must feel, but that it was OK. I told her she would be able to move again soon, but right now she needed to rest to help her throat heal. The nurse gave a supplementary dose and within seconds Audrey calmed and fell asleep again while my lips and palm rested on the top of her head. It was a difficult but joyful moment, connecting with her like that and being there to comfort her. What a nightmare that would be, to wake up and realize that you can't move! In fact I'm sure I've had that nightmare before. The Versed medicine she's getting will help her memories of this be fuzzy later on, but selfishly I confess--I'm so happy I got to see her sweet eyes, and know that she knows I'm here.

Reunited

I'm finally with my sweet baby girl! Gave her a very gentle kiss (or 7) on top of her soft head after checking to make sure that was ok. She'll be completely immobilized by meds for at least 24 hours, and heavily sedated for still longer. Her eyelashes fluttered a ton when I came in the room and was asking the nurse questions. I asked them if she could still hear and recognize my voice and they said yes. I don't know whether it was a basic reflex or not, but it made me feel good.

Most Complex Surgery Yet

She's done at last and in the ICU, but they're not ready for me to see her yet. I'm kind of in limbo. Not hungry but should go get food. The surgery was a success, but it was not nearly as easy as they'd hoped and although they did all they could, it looks like she's still in danger of fistulas forming in the future. There was a lot of scar tissue to remove, a bad segment of lung they had to remove, a partial resection of the esophagus to get rid of the part that formed the fistulas and a weird blister inside the esophagus, organs shifted around a bit to optimize breathing, airway was more narrow than they expected, so they did more tacking to the spine than expected. It's complicated, but in the end she has a wide open esophagus and wide open airways for now. Dr J seems to blame himself for not having done a good enough job 3.5 years ago, somehow having caused all this, which is ridiculous. Her anatomy is simply very tricky and does its own thing, and likes to heal in wonky ways. I am working on not worrying about how everything will heal given her history, but not succeeding very well at the moment. Please send prayers to help me let go of these things I can't control. I've been doing pretty well all day, and right now I just want to see her even though she won't look great and won't be awake for at least a day. Drs Jennings and Manfredi are a couple of amazing, tired guys.

All Set

As they say in Boston, we're all set! Today's major surgery will include repair of her two fistulas (unnatural connections between the lungs and esophagus, a posterior tracheopexy (they will tack her trachea onto her spinal column to keep her airways more open), a bronchoscopy, dilation or possible full resection of the esophagus, and checking the position of her G-tube.

 While Audrey had a fun bath, I baked my mom's special chocolate chip cookies to bring to the hospital.

 Eating a chocolate chip cookie on difficult hospital days has become a tradition for me.  This time, with so much unexpected time to prepare, I'm all set to share.

 Princess Audrey and her little turtle Boston are ready to rock this surgery. 

I can't thank enough our sweet hosts, Anna and Tim, who have adopted us into their home for the past couple weeks after Brenda's family needed their space back.  Thank you with all of our hearts, to each of you, for your kindness and generous hospitality.  We'll remember this time for always.

Park Break

A few shots from our trip to the park. We had two beautiful days sandwiched between yuckier weather, made for a nice break!

 We were impressed with this beautiful wooden musical instrument.

 Ring pop on one hand, goldfish in the other, bunny slippers and riding the bike in the house. This photo pretty much sums up our post-outing pre-bedtime slumber party.

And out.