Friday, November 11, 2011

because you can't, you won't, and you don't stop

I know, this post is long overdue. Most of you already know, but Emma is okay. Penelope, Dan and I just hung on for the ride, because what else can you do, really?

We waved goodbye to her as she was wheeled off to surgery, and then we waited. Too tired to knit, I tried to read a little. We were fine, really; just waiting, waiting, waiting. It wasn't until Dr. Z, the cardiologist, came out to talk to us, insistent that we find a room, that we got nervous.

During the surgery, while Dr. W was scooping out enough surrounding tissue to ensure that the membrane would not grow back, he created a small hole between the aorta and the left ventricle. He stitched it up but the stitching didn't hold when they restarted Emma's heart; the hole reopened.
Dr. W put her back on bypass was patching the hole with Teflon as we spoke. The thing that Dr. Z was actually concerned about, though, was Emma's rhythm -- her heart was beating too slowly, and Dr. Z was worried that the heart's electrical system had been damaged by the surgery (this is called "heart block"). There was nothing to do for this but wait and see, while keeping her hooked up to an external pacemaker

They gave it about seven days before they concluded that her heart was not returning to a normal rhythm, so now Emma has an internal pacemaker.

That's the quick version. The long one?

After Dr. Z left us, I emailed, then called my mom (she and my dad were here to take care of Penelope while Emma was in Boston). She answered the phone and I said, "How scared do we need to be?" My mom, my wonderful mom, Nurse Grandma, told me "Honestly, not very," and Dan and I both started breathing again. We filtered everything through her; she translated it for us, then we told Dan's parents and put it up on Facebook.

That first night, I stayed in the parent room down the hall, and checked in on her a few times; knowing they would come and get me if something was wrong didn't make it any easier to sleep; I wanted desperately to be with her, but there's just not room enough for the patient, the parent, and the respirator. Necessarily, it's the parent that gets kicked out. She was hooked up to the external pacemaker, so she had several wires just sticking out of her chest and belly in unexpected places; an IV line in her right hand, as well as one in her neck, both of which were in use; two chest tubes in her belly to drain fluid from her chest cavity; the catheter (everyone's favorite!); the pulse-ox monitor; and the nasal tube. Even though she was doped up, she wanted to sit up. Dr. D, the anesthesiologist, was amazed (pleased, really) at how many times she tried to sit up on her own, even on the morphine. (That's not to say that the doctors and nurses were pleased, but to Dr. D it was confirmation that Emma had tolerated the anesthesia well.)

The next morning (June 16), Emma was extubated about two hours ahead of schedule (another good thing); the gastric tube was removed early that afternoon, and she began with Jello and Popsicles, in spite of the fact that what she really wanted was potato chips. She also watched a video message from Penelope and recorded a short response.

That night, the nurse and I had to change Emma's dressings several times; one of the leads to the external pacemaker was acting as an extra chest tube. Although this was ultimately okay (better out than in!), the dressings were completely soaked every 60 minutes or so.

I got almost no sleep; each dressing change took about an hour, because Emma had to be cleaned up and the bedding and hospital johnny had to be changed in addition to the dressing. The whole time, Emma was incredibly patient, but by the time each change was done, Emma and I were both wide awake and it took quite a while for us to settle back down and fall asleep. By the time we were asleep, it was nearly time for the dressing to be changed again. As it was, the nurse let it go a little longer than she would have during the day, but it was still grueling.

The next morning, they took her off the morphine (which made her very nauseated) and started her on Toradol with Tylenol as needed; her appetite picked up and she had some real food (chicken salad) for dinner. We also got the okay (from the PICU's head nurse) for Penelope to visit the following day. Seeing her sister was an enormous boon to Emma's spirits! Before I arrived with Penelope and my parents, Emma was de-lined: the catheter and arterial lines were removed, as were both chest tubes. The seepage around the one pacemaker lead was slowing down a bit.

Penelope visited again on Father's Day. A nurse caught sight of Emma's smile as Pen entered the room and declared Penelope "the only one who can make Emma smile!"

Later in the day, Emma had a visit with A, a social worker from the ChildLife program; A and her coworker, L, would keep us informed about how Emma is handling everything emotionally. So far, she is right where they would expect her to be.

The doctors have decided that she's definitely getting a pacemaker; at this point, it's a matter of getting on the OR schedule. From this point, I'll let my Facebook posts take over.

June 19, 8:50 pm: There's my Emma's infectious giggle! Thank you, Disney Channel's So Random!

June 20, 7:43 pm: Emma's pacemaker will go in on Tuesday . . . no, Wednesday . . . no, Tuesday. Okay, Tuesday afternoon officially.

June 21, 2:36 pm: . . . and we're baaaaaaaaaack! To Wednesday! We're perfectly willing to be bumped, however. Heart-transplant trumps still-kinda-working-heart. Emma was just relieved to be able to eat.

June 22, 9:31 am: Dr W's just been sent home to sleep. Emma had a bowl of Cheerios at 6:30 and is now on No Food or Water. She'll go in for her pacemaker this afternoon.

June 22, 9:42 am: The echo team is in, now. Still haven't had rounds come our way yet today. Gnomeo and Juliet is on . . . again!!! ;-) Aunt Reeb wonders (via comment field) if Emma has memorized it, yet, and Emma responds "Basically, almost the whole thing!"

June 22, 10:06 am: Rounds have been by, now; surgery will likely start between 12 and 2 this afternoon.

June 22, 2:12 pm: Bumped AGAIN! It's Transplant Week! Tufts has a kidney transplant inserting itself into the midst of the logjam created by yesterday's (okay, last night's!) heart transplant. The PA says Emma will definitely go tomorrow; they don't want her wait another day.

June 22, 4:26 pm: Dr W. is hoping to get her in as first case on Thursday. He spent half the afternoon skulking around, trying to snag an OR today to no avail.

June 22, 7:30 pm: We're officially on the schedule for 7:30 am Thursday! NPO (Again!) from midnight, tonight. Third time lucky?

June 23, 8:01 am: Dan called at 7:40 & Emma is in surgery!

June 23, 12:03 pm: Emma ROCKS!!! She was out & awake by 10:30. She's currently back in the PICU, resting and watching her dance recital DVD.

June 23, 2:02 pm: Emma has had some strawberries & some applesauce, & is currently FaceTiming w/ Penelope. Earlier, Dr. D was in & laughed at the fact that Emma was already sitting up & playing games on Webkinz.

June 23, 6:14 pm: According to Nurse K, Emma is amazing. Nurse K says she's going to tell all her cardiac patients now to "Be strong; be an Emma!"

June 24, 12:14 pm: When I got off the elevator this morning, Emma and Dan were in the hallway, waiting for me! The girl kicking butt and taking names? That's my daughter!!

June 24, 6:06 pm: Took a walk all the way down to the 1st floor gift shop with Emma & bought a few small things. Then we wandered over to Au Bon Pain & she ordered a tuna salad sandwich, chips, lemonade, & a chocolate chip cookie for dinner.

June 25, 11:48 am: Thank you, thank you, thank you, everyone who kept Emma and our whole family in their thoughts this past 10 days! Emma is home, the beagle has calmed down, and my twins are being normal, 8-year-old twins once again!

Yes, she has a medic-alert bracelet, now. The pacemaker is for life, and she's not allowed to do backbends or the Worm. Certain amusement-park rides are verboten, blows to the belly are cause for concern, and she will forever be the Pat-Down Princess in airports. I'm trying to help her find a response that she's comfortable using when strangers ask her about her scar (which is visible when she wears a v-neck shirt or a swimsuit). But she's been on her bike again since the beginning of August, and she's back in ballet/tap/jazz and Hip-Hop. She's thrown herself back into roller skating Fridays with gusto. We even had a Harry Potter Film Festival in July, because the girls wanted to see the movie in the theater with us! People who don't know what happened would never be able to guess.

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