I've divided my long-overdue update into the Good, the Bad, the Exciting, the Funny, and the Really Funny.
On a good note, Lauren's remained stable health-wise. She's still on a continuous infusion of Milrinone into her PICC line. Over the weekend, her chest x-rays looked a bit worse than usual so they've been tweaking some of her meds. Overall, nobody seems too concerned about how her heart is holding up. She had an echocardiogram done earlier this morning, but I haven't heard the results yet. We know that it won't ever look "good" but I'm praying that it's still "stable."
She's still getting used to the idea of lollipops. She's happy to play "peak-a-boo" and put them into her mouth. She's not too thrilled with the idea of actually tasting anything. One of her favorite things to do is to have me take pictures during her sessions with the speech/feeding team.
In addition to her sessions with occupational therapists and a physical therapist, she's added in "gym time" with Dr. Mike, an exercise physiologist that works with the cardiac patients. She lifts weights, and he even got her on the treadmill for a while. She wasn't thrilled the first day, but yesterday she walked for 5 minutes.
Perhaps the biggest news on the sixth floor is that the physical therapist let Lauren ride a tricycle last week and then left it for her to continue riding. She spends most of her days doing laps around the floor with most of the doctors commenting about how she's like the Energizer Bunny -- she just doesn't stop. Yesterday, she was going practically non-stop all morning long, and I had to pull her off the bike for a three hour nap.
The bad news is that there's a nasty virus (norovirus) running rampant around here these days. In order to stop the spread, the cardiac floor has shut down the playroom, closed the family lounges, and limited visitors. I was too afraid to let the big kids come visit last weekend, and it later turned out that they wouldn't have been allowed up here anyway. We hope these extra precautions will be short-lived. (Unfortunately, I can hear the crowd downstairs in the ER as I type this update.) Thankfully, neither Lauren nor I have gotten sick -- we're becoming quite fanatically about handwashing and it helps that we're sequestered up on the cardiac floor, not roaming about too much.
Yesterday's exciting news came when Lauren was asked to pose for some pictures for CHoP's marketing department. They didn't have a specific job in mind, but they'll keep her pictures on file to be used when something comes up. Lauren had a blast posing for the camera. They took some shots of her in her bed right after she woke up from her nap. Then we let her out in the hallway on the tricycle. The photographer took tons and tons of pictures of her riding around with a big grin on her face. At one point, Lauren even took remote directions when he went to the other side of the building and to take pictures of her riding across the bridge. I saw a few of the cute pictures while they were here, and I'll get a CD of all of them in a few weeks. I can't wait to share them.
I've been collecting some of the funnier moments to share. For instance, the other night one of the nurses noticed that she knew all of her colors and asked if she went to preschool. Lauren answered, "No, just to the playroom." (I thought it was particularly funny that the student nurse was impressed that Lauren knew the colors of the heart leads and missed the fact that Lauren knew where to reattach all the wires.)
The other afternoon, Lauren talked her nurse into letting her hold her pager. One of the respiratory therapists was sitting out in the hall and noticed Lauren with the pager. It was just too tempting so she sent a text page. I wish I could've gotten a picture of Lauren's face when the pager started beeping and vibrating in her hand.
Lauren's funniest moment so far this week was just a few minutes ago. One of Lauren's favorite nurses is taking care of her tonight. We had walked down the hall to tell him that she was getting into the shower. He checked some of her IV pumps and since it was the beginning of a new shift, asked her what her name was. She looked up and said, "Goof-ball." (He's known for walking into her room and saying, "Hey, goofball.")
And, lest anyone think that Lauren has a corner on the funny moments, I'll share one of my own. I've often thought it was funny that one of my favorite lunches is to get a lamb gyro (a Greek sandwich) from the Oriental couple that runs a particular food stand in the parking lot across the street. Yesterday, I walked over and some guy started talking to me in line. Being from further south than Philadelphia, I politely responded and we chatted a bit back and forth while waiting for our food. As I walked away, he followed after me and asked if I was ever free on the weekends. I guess hospital life isn't treating me too badly if the guy that drives a cement mixer is trying to ask me out.
Thank you to everyone for your prayers and words of encouragement. Some days are definitely harder than others up here. It's slowly dawning on me how long this might take and how long our family is going to be split apart. I'll keep taking it one day at a time and keep looking for the bright moments to cherish.