Thursday, July 30, 2009

And on the 204th Day...

...God provided a new heart for our little girl! The day began like most of the previous 203. I got up and went to work feeling tired, worn out, wishing it would end...I even came across a cool word that I hadn't used in a long time while reading an article: ennui. I even posted it as "the word of the day" on my Facebook status update. I went about my day and didn't give it anymore thought.

I left work a little early because I had to run by the church to take care of some stuff. Then I went home, changed clothes, and stuck my dinner in the nuker, thinking about what I needed to get done that night. Suddenly the phone rang. The caller ID said it was Cristi. At 6:30, I thought it early for her to be calling, but occasionally she calls me at odd times, so I didn't think about it too much. After all, why should I expect anything? It's been Groundhog Day for 204 days! But, after exchanging marital pleasantries, I hear, "So, are you up for a road trip?" "Come on, are you kidding me?", I respond. "I couldn't kid about that. You'd kill me!" "Yeah, but it's been so long! Do you really want me to come right now?" "Yes." "OK. I can leave in an hour."

I arrived at the hospital about 9:45. Lauren was just finishing up labs and x-rays, but still didn't know what was happening. We knew that if we told her, she'd never go to sleep, and she'd need her rest with the trauma to follow. Cristi did read her the transplant "storybook" from Child Life, though. Lauren liked reading that book. They read it several times that night.

It was great getting to hug Lauren before the big event. After putting her to bed, Cristi and I went and hung out with some dear friends from New Jersey that came over to keep us company. It was nice to be able to think about other things for a while, but strangely, neither of us had the uncontrollable wave of emotion we expected. We also talked to Lauren's doctor, who was away for the week at transplant camp. He told us the heart was not good -- it was perfect! Awesome! Then it was worth the wait! At midnight, we sent our friends on their way. We knew it was going to be a long night, because, at that point, the Philadelphia team still hadn't arrived at the origin to pick up the heart. The adrenaline was wearing off, too. I was getting tired. Cristi and I went back to Lauren's room to get a nap. At this rate, it would be morning before Lauren was out of surgery.

At 1:30, we woke up to find anesthesia in the room. I guess that heart travelled quicker than we thought. Cristi quickly woke Lauren up, who took one look at the anesthesia team and said, "My new strong heart?" Cristi told her, yes, it was time, and as Lauren's nervousness came on her, the anesthesia team sedated her. We walked her all the way to the OR. Her eyes were open, but no one was home. I suppose that was good. Well, here began the journey into the unknown...

We went back to Lauren's room to get some sleep. After just a few minutes (about 2:15), a nurse came in, introduced herself, and told us she'd give us hourly updates, but to expect the surgery could go 4-6 hours, possibly up to 10. At 3:30, she came back and said that they were ready to put the new heart in. At 4:30, she told us they were just finishing up -- after only 2 hours! That could only mean good news! At about 5:00, the surgeon came in and said that everything went extremely well and he was going to go extubate her (take her off the ventilator). We were shocked! That usually takes at least 24 hours! We found out later that that surgeon tends to be very conservative, which makes the extubation that much more remarkable!

At 5:30, we were finally able to see Lauren. She kinda woke up -- enough to mutter a little bit, but stayed pretty much out of it that whole day. The doctors said that they couldn't be happier! We couldn't have been either! So much culminated in that one moment: Joy over a successful surgery and transplant, the realization that the end of this portion of the journey is finally in sight, and the realization that it had only been a few short hours since a family had seen through the grief of losing their child to give ours the gift of life.

We continue to think about the donor family and to be thankful for their generosity. We received a package yesterday that allows us to send an anonymous thank-you note to the family. We can't wait to relay our thanks, tell them about our wonderful little girl, and how many people have been touched by her story.

Lauren continues to do well, and we've passed a major hurdle...but this story is far from over. As Lauren's cardiologist explained to us, we've essentially traded one disease (heart disease) for another (transplant disease). Obviously, one is a better option for life than the other, but she will be on a large drug cocktail for the rest of her life. Her immune system will be suppressed, which means it will be much easier to get sick. And, transplanted hearts don't last forever. We don't know how long it will last. What we do know is that hearts transplanted 15-20 years ago are failing now. Doctors have learned an enormous amount over that 15-20 years, but it's still fairly safe to say that she may have to go through this again. Wow! Hard to think about...

Lauren still has all of her other issues, too -- or at least we don't know how they've been impacted. We're not sure if her pulmonary hypertension has resolved with the new heart. Her cardiologist told us beforehand he believed it would resolve. We should have a good idea about that before Lauren comes back home. She still has poor muscle quality (i.e., not all her muscles are formed correctly). We can hope the new heart will at least give her more stamina that she can pair with her physical and occupational therapies to get stronger. There's also an on-going study that may give us some insight as to potentially helpful treatments. Finally, she's still completely tube-fed. We had a few weeks of working on eating prior to transplant. Unfortunately, Lauren didn't cooperate with the two swallow studies and they terminated the feed-a-Lauren program. Who can blame her? Who likes barium, or having a camera shoved up your nose and down into your throat? We're hoping to start working on that again before discharge. There are so many much to think I won't right now.

Instead, I will rejoice in the answered prayer of a hugely successful surgery and our family being reunited. We don't have an exact date yet, but we have a target timeframe. Lauren will remain in the ICU for 1-2 weeks, then she'll transfer back to the regular cardiac ward for another 1-2 weeks. During that time, they'll be constantly monitoring her progress. After discharge, she'll have to remain in the local area for another couple of months due to the high number of appointments. She'll have doctor appointments twice a week and several heart caths during that time. But that will taper off, and our family will once again be whole again -- probably around Halloween. That's about 10 months of being apart. In that time, our family has changed a lot. Lauren talks all the time now. She's like a little person with her own personality. Addison has turned into a full-fledged Tween while Cristi's been gone. Brennan's grown up, too. We've moved and Cristi doesn't know where anything is in the new house. There will be challenges reintegrating, but I'll take it. We have a date!

Wednesday, July 29, 2009

Camper's (B)Log

A couple of weeks ago, the big kids and I went on a family camping trip with some dear friends of ours, the Leonards, up to Cunningham Falls State Park in Maryland -- just south of Gettysburg. Below is the play-by-play of that eventful trip.

Thursday morning: We went over the Leonards to pack the coolers and finalize details for our departure that afternoon. The plan was to leave mid-afternoon (before rush hour got too bad) after an appointment for Brennan and a mid-day engagement the Leonards had.

Thursday afternoon: It turned out to be 3:45 by the time we got off for various reasons, and I knew that we'd hit some rush hour traffic. Sure enough, before we even hit the -270 spur, traffic came to a stand-still. I assumed that traffic would ease up once we finally hit the -270 HOV lanes -- and it did -- but then it came to another stand-still before we got out of the DC metro area. We finally heard rumor of an accident about three miles south of I-70, 20 miles north of where we started. So, our 1.5-hour trip turned into a 2.5-hour trip. The Leonards got delayed and didn't make it to the site until 8:00 that evening -- and they had our food! Once they got there, they started setting up their camp and I started cooking the food. Cooking (and eating) in the dark was definitely interesting. For those that didn't know, the fire from a propane camping stove does NOT provide much light!

Friday morning: I awoke to find out that something (a raccoon perhaps?) had gotten into our picnic pavilion and into the trash. No biggy. Just pick up the junk and double-bag the trash. Brennan really wanted to make a fire in the fire pit to roast marshmallows (what kid doesn't?), so he and Reese (the Leonards' 4-year-old son) went out to collect sticks while I cooked breakfast. The landscape around our campsite had a fair drop-off, but the kids had been careful and had been playing for a little while. All of a sudden, Reese screamed. Vanessa ran to him and he was holding his arm. To make a long story short, his arm didn't look good, so Vanessa loaded Reese up in the car and took him to the hospital. It turns out that he broke his arm at the elbow and had to have surgery to put pins in, which would require an overnight stay -- less than 12 hours after we all arrived! So much for a nice, relaxing family/friend camping trip!

Friday afternoon: We went to the hospital to visit Reese later that morning. When we returned, we quickly had lunch and it was starting to rain. Thankfully, I had just sealed the tent prior to the trip, so the rain was no problem. Uh-huh. I walked in the tent only to hear my kids tell me that there was water on the floor of the tent and some dripping over their heads. What happened to all that tent sealant I put on??? Well, the rains came down...and down...and down harder. As the day wore on, we developed more leaks. I was left wondering whether it was the sealant that didn't work or the sheer volume of water that almost any tent would be hard pressed to withstand. Finally, out of boredom, Brad came over and asked if we wanted to go to Gettysburg just to have something to do. His two remaining kids are 3 and 1, so entertaining them for the afternoon was much harder for him than for me. So, we packed everyone up and away we went for an afternoon driving tour down History Lane. We didn't get to walk Pickett's Charge, but we did walk the ground of the high water mark of the Confederacy. Love that place!

Friday night: The rain finally quit. I fixed dinner, then Brad took his kids to see Reese at the hospital. Addison, Brennan, and I enjoyed a nice relaxing evening roasting marshmallows and reading.

Saturday morning: I awoke to find that the raccoon had gotten into the trash again...and the two bags of marshmallows that I forgot to put in the car the night before. Oops! I fixed breakfast for all of us and discussed plans with Brad. Reese was going to get discharged that morning, so he was going to go pick them up and bring them back so that we could all go hiking to the falls. Vanessa loves waterfalls and didn't want to miss it. After that, they were going to eat lunch with us, then pack up and head home. The falls were actually a stream of water that cascaded down a high and wide rock face rather than a traditional water fall. But, you could climb up the rock face, which was cool. We had a great time!

Saturday afternoon: After a late lunch, the kids and I headed over to the lake. We decided we'd either go swimming or rent a canoe or paddle boat. It turns out that the lake is a huge draw for folks on the weekend. It was almost as if the state park was there for the lake and, oh by the way, they have camping, too. We aren't used to seeing that many people around where we go camping! On top of all the people, both swim beaches were closed due to contamination and there was an infinite wait for a boat. So we decided to go hiking instead. We found a trail map and found that we could hike from our camp site back over to the falls -- only about a mile hike -- so we decided to do that then come back for an early dinner. When we reached the falls, we climbed all the way to the top of the rock face to enjoy the view, then we picked out a place right next to the water and just sat there. Addison convinced us that we should take our shoes off and stick our feet in the stream. I didn't want to at first, because I'd just have to put my shoes back on...with wet feet. After a few minutes, I couldn't take it anymore and decided to live a little. I took my shoes off and stuck my feet in, and I'm so glad I did. It felt good. It was peaceful up there. It was awesome! We hiked back, had dinner, and enjoyed a very restful evening roasting marshmallows (newly purchased from the camp store!) and reading before dark. Now that's the life!

Sunday morning: We struck camp and headed home, minus the traffic jam. Overall, a very nice weekend -- even with all the unexpecteds! I am sorry that Reese broke his arm and turned the Leonards' weekend upside down. I know they were hoping for a restful weekend as well, but I think they enjoyed the small time they were there. Oh, and Reese is doing very well, but he has a massive cast on his arm. He's quite a trooper!

Tuesday, July 7, 2009

Boys Will Be Boys

Brennan went to camp for the first time this year. He was very excited. Addison has been the last 3 years, and Brennan was ecstatic that it was finally his turn. He talked about it for weeks -- that he was going to camp with his friend, Tommy.

We had a minor diversion early that week: Brennan got hit in the head with a baseball bat and had to have five stitches. Asked how it happened, he replied, "Standing too close." Yep. Hoping Darwin's theory will mean that he'll use his head a little more (or is it a little less?) next time he's standing next to the kid with the bat. That was on Monday. On Friday, Brennan got the stitches removed to cut down on scarring. So, having had experience in these matters, I told him to be sure to put sunscreen on his face every day because scars don't tan well. Otherwise, he might end up with a bright red war wound on his forehead for the rest of his life. He assured me he would.

Having outgrown all but his peanut allergy, food was not so much of a concern. In fact, I was quite glad that he would get to partake of daily canteen (i.e., Coke and candy) with very little restriction. The only minor concern was that the daily I-don't-like-that-food option was the make-your-own PB&J. Now, we're not quite certain just how allergic to peanuts he is since he's never been exposed, but his blood test numbers are (literally) off the charts. We do know, though, that there's no problem with him being around peanuts. We just don't want them on or in him. He can theoretically sit right next to someone having a PB&J with no adverse effects. So, I told him not to get in a fight with the kid at his table eating the peanut butter sandwich. He assured me he would not.

I helped him pack his suitcase. I even separated his clothes into ziplock bags for each day -- complete with a change of underwear. We talked briefly about this, too, but I wasn't too worried, because I was assured by our veteran camp-goer that campers are required to take a shower every day. After all, if you have a ziplock bag for every day and you're required to take a shower everyday, by the transitive property of logic and mathematics, one can assume that the boy will take off the entire old outfit (including underwear), take a shower, and put on the entirely new outfit (including underwear), post-shower. Good dad.

With preparations complete, we loaded up the car, and drove out there. It turns out that, not only was his friend Tommy there, but also several of his other friends. We arranged for them all to be in the same cabin. I felt sorry for his counselor. He had an almost entire cabin-full of rising third-graders -- most every bit as rowdy as Brennan. All I can say is I'm glad it was him and not me! I do have to say, though, despite all the things you're already anticipating I'll say, apparently, Brennan was the master bed-maker (a trait we'll be sure to make use of at home now that we know!)! He won best bed in his cabin one day and was apparently hired to make sure that the beds were made properly for all the boys that were (shall we say) bed-making challenged -- to ensure that the entire cabin wasn't penalized for untidiness. So, props to my son! Who knew?

Well, I missed my son. I e-mailed him everyday, but never heard from him. It was probably a good thing. That at least meant that he wasn't sending letters saying he was homesick! So, I was excited to go pick him up. When we got there, Addison saw him first and rushed up to him. I followed behind and the first thing she said was, "Look at his shoes!" I looked down and they were solid brown. They used to be blue and gray. The conversation then went something like this:

"What happened to your shoes?"

"I was wading in the creek looking for crawdads."

"With your shoes on?"


"How many days?"

"Pretty much every day."


"So, did you use sunscreen every day?"


"How come?"

"I didn't have time!"

"You didn't have time to put on sunscreen?"


"But you had time to hunt for crawdads?"


Amazingly, his scar looks pretty good. I'm thankful, but wondering why I don't catch breaks like that...

Later, at home, unpacking his suitcase, I found one pair of socks that went straight into the trash (still wet), another that looked salvageable that went into the laundry, and five pair that were still rolled up neatly in his suitcase. I said (You can see it coming, can't you? After 11 years of being a parent, I still have a propensity to ask dumb questions!), "Why didn't you wear these socks?", to which he replies, "Well, I didn't want to get my socks all messed up wading in the creek looking for crawdads!" Right. Guess it was okay for those shoes, though!

Still sorting through the suitcase, I notice that pretty much everything is wet in there. I ask, "Why is everything wet in here? Is it because your towel was in here?" He responds, "I don't know. Maybe. Or it might be that my clothes fell in the water while I was taking a shower." Really? How is it that all your clothes got wet in the shower every day??

Finally, as I come to the bottom of the suitcase, I find ziplock bags in there with...wait for it...clean underwear still in them! I said, "Why is there clean underwear still in here?", to which he responds, "I don't know." Still having not learned my lesson about asking dumb questions, I continue, "I thought you were supposed to take a shower every day." He says, "I did!". "Wait," I said, "you took a shower every day, but didn't change your underwear every day?" Shyly, "Right." "So...How many days did you change your underwear?" Mind you, he was there for 8 days. "Oh, prob'ly three." Un. Be. Lievable.

I just shook my head. I wanted to be upset with him, but instead I just laughed to myself. I vaguely remember doing stupid stuff like that when I was a kid. Some things never change between generations. And some things are obviously in-bred...To boys! Stop thinking that! I heard that! It's all boys -- not that he got it from me! At least it's never a dull moment around our house! Oh, and the shoes? They went in the trash...right after he wore them to the store to buy new ones. I leave you with a couple of pictures of the old shoes. Any other parents seen these shoes before?