Thursday, January 8, 2009

Settling In

One of the reasons I started this blog was so that I could have a place to record all the big and little events of Lauren's transplant journey. I'm also taking lots and lots of pictures. The other day I read about a scrapbooking challenge to take a picture every day in 2009 and make them into a scrapbook. I didn't start on January 1st, but I think it could be a great project to chronicle this hospital stay. I figure that if I post the pictures here and record some of the stories, then I'll have a good jump-start on turning it into an album someday (perhaps I'll have some free time in late 2013).

I guess a bit of background is in order so that everyone can appreciate the first picture. Our small group at church meets every Sunday night and shares prayer requests. It became our tradition to go around the circle with everyone taking a turn. Occasionally, someone would say, "I've got a LIG." That stands for "Life Is Good" -- basically, that there's nothing special they'd like to request prayers for.

Some of you may have heard about our crazy August. Brennan was admitted to Walter Reed for a three-day video EEG that showed epileptic activity. He was discharged late Wednesday night. On Thursday morning, Lauren fell out of her seat at the kitchen table and broke her arm. I headed to Philadelphia to have it set. On Sunday, Tim's turn came during prayer requests. He calmly said, "Life is Good." I was sitting next to him, and I thought that it was the funniest thing I had heard in a long, long time. I just couldn't stop laughing.

Afterwards, I remembered a company that makes t-shirts and other items with the "Life is Good" logo. For my birthday, Tim got me the t-shirt I strongly hinted that I just had to have. (It's chocolate brown, and the "life is good" wording is printed underneath a steaming cup of coffee.) For Christmas, my little sister gave the whole family shirts. We decided that we should all wear them when Lauren went to the hospital.

And so, pictures of the kiddos in their shirts the morning that we left:



The original plan was for Tim to drive up to Philadelphia with us, but he managed to get a better offer for that day. (Be sure to see his blog for pictures of the President.) Lauren talked me into letting her control the music choices for most of the drive. Her favorite was singing "This Little Light of Mine." The version she likes is on a CD from a musician that routinely plays for the children at CHoP. I think Lauren will be thrilled when he comes by next week. When we stopped for lunch, I managed to get a picture of her performing.

Tim has joked that I packed for this deployment with military precision. I have him fooled. :) But, actually, I did have a plan for getting all the necessary stuff into the hospital without being too loaded down. My plan went out the window when Lauren decided that she was going to walk instead of riding in the stroller. Baby ended up riding in there, but she doesn't weigh enough to let me hang stuff from the handles of the umbrella stroller without it tipping over. I carried several bags and helped Lauren push Baby up to the cardiac floor. She walked right up to the front desk of the CICU and told them her name.

Of course, as soon as we walked back to a room, Lauren starts protesting, "No pokes!" She's sadly been up here too many times and knows what to expect. Her second complaint was over the fact that they had set up a crib for her. We managed to convince her that it would be okay to sit in the crib and have a tea party until they were able to get a big-girl bed. Later that afternoon, they were able to get an IV in with minimal tears. Big kudos to the IV tech, her nurses, and the child-life specialist.

Throughout it all, Lauren was pegging the "cuteness meter." She helped put on the cardiac leads, played tea party with all the doctors and nurses, and asked her nurse for lotion to smear on her nose.


Because she was in an ICU pod and not a private room, there was not room for me to stay with her overnight. Her nurses said that she hardly stirred all night. I guess trying that hard to look cute will wear a girl out. In fact, she thought the next day's dark, rainy weather made a perfect morning for sleeping in late. She didn't wake up until sometime after Tim and I finished our Starbucks.

It was a busy day for Tim and me; we had multiple meetings with the transplant team -- cardiologists, psychologist, social worker, child-life specialist, and more. Lauren's big excitement was a new PICC line. The cardiac anesthesia team came to transport her down to Interventional Radiology for it to be inserted. Lauren wanted no part of going anywhere in her bed. Thankfully, the anesthesiologists started a bit of the "happy juice" before we even started moving. She calmed down and was starting to wobble as they pushed her down the hall.

After the PICC placement, Lauren moved to a private room. I settled in for the first of many nights on the couch beside her. Thankfully, we both got quite a good night's sleep.

This morning, Lauren finally moved to a room on the cardiac step-down side. After a few days of life in an ICU pod (four beds to the room) and night in a room on the ICU side, we're happy to be in a regular room. She's still on continuous heart-monitoring, but the nurses don't have to do the other checks quite so often. It feels good to know that we can start settling in and working towards a schedule. Lauren was happy to walk over to the playroom for music therapy this morning, and she played with play dough for a while this afternoon. Unfortunately, she started to feel a bit puny and spent much of the afternoon hanging out on the couch in her room, napping and snuggling with Mom and Dad. We're hoping that it's just a puny day and not the start of a cold or something.

Perhaps the biggest news for today came during a meeting with one of the transplant cardiologists. She got a text page from the nurse coordinator saying that Lauren was officially listed for transplant. The waiting starts.

5 comments:

  1. Great pictures...your kids are beautiful! You guys are so lucky to have each other...you're an amazing family!

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  2. Reese said a prayer for Lauren today! She look so cute in her ponytail! We really liked the pictures. Miss you!!

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  3. She is such a big girl. Lots of hugs from us. As a funny side note, I bought myself that exact same "brown with coffee cup" Life Is Good shirt too to remind myself when times are rough, that life IS good!. Every time I put it on from here on out I will smile and say a small prayer for you and yours!

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  4. Thanks for sharing your incredible journey with all of us. I love your idea of pictures every day. I often say we don't take enough pictures. Who says there have to be perfect albums right away? Thanks for the inspiration to just DO IT, and to appreciate that life truly IS good. You all continue to be in my daily prayers!

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  5. If you're low on ideas, you could take pictures of taking band-aids off. Robin Williams said we neglect those things when we take pictures...

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