Tuesday, February 24, 2009

The Good, the Bad, the Exciting, and the Really Funny

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.

Tuesday, February 17, 2009

A big day!!!






Lauren's still not sure what she thinks of the whole idea. She'll play games hiding the lollipop in her mouth, but she's not thrilled when it touches her tongue. I keep reminding myself "Baby Steps."

It was so much fun this morning to let her pick out a lollipop for breakfast when I had another McMuffin.

For Lauren's new friends, she hasn't been allowed to eat anything by mouth since November 2006. This is a big step in the right direction.

Wednesday, February 4, 2009

I'm just so proud of her...

I wondered how well a three-year-old would cope with an extended hospital stay and all that goes along with it. I'm finding out that this little girl is even more amazing than we thought. She's rapidly adjusting to our new schedule and is impressing everyone with how much she picks up on.

Every morning, she wakes me up (bright and early) asking for a Dora video. Once the portable TV is in her bed, she tells me to go get a shower. When I check back in on her afterwards, she suggests that I go get breakfast while she watches another Dora show. Thankfully, after the morning Doras, we get a TV break until lunch-time. In some ways, I can mark the passage of time by how many Doras we've watched. :)

She copes so well with all the medical "stuff" that I can't help but be amazed. She's helps the nurses push all of her meds through the g-tube and reminds them if they forget to do anything when they check vital signs. She has her own stethoscope, and this afternoon she looped it around her neck and walked back to the playroom to listen to her baby's heart.

Yesterday was her second attempt this week at getting enough blood to run labs. Our child-life specialist suggested when we got here that we take her to the treatment room to do anything uncomfortable. It really does help her to know that her room is a "no pokes" room. Anyway, she was doing occupational therapy in the gym yesterday morning when they came to get her for the blood draw. She immediately knew what was going on when we left to go to the treatment room. She also knows exactly what she's entitled to when they draw labs. She specifies that she prefers to sit up and will even tell the phlebotomist which arm (or foot) would be better. She knows to ask her nurse for the Dora band-aids, and she knows Miss Meredith will bring the special "poke toys" to distract her. Of course, she also tells Miss Meredith to put away the "poke toys" when we're done because she doesn't need them anymore. After two failed attempts at drawing blood yesterday, she hopped down off the table and scurried back to the playroom to claim more stickers for her collection.

I'm torn. A three-year-old shouldn't have to know the system this well. On the other hand, I can't help but be just as proud as I can be that she faces everything so bravely. She's definitely one special girl!

Monday, February 2, 2009

Slideshow Explanation

For some reason, I can't manage to insert both words and a slideshow on the same post. Instead of posting a huge update with all of the latest pictures, I turned them into the slideshow below. It's some of my favorite pictures to depict the past week or so at the hospital. It includes the fun we had while stuck in the room on contact isolation, the exciting first trips to the playroom, and the precious snuggles with family. One other exciting picture is of Brennan enjoying an Egg McMuffin for breakfast after outgrowing his allergy.

Thanks for following our story and praying for all of us!

Day-by-day update

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