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.

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.