Friday, March 13, 2009

False Start...Five Yard Penalty...Repeat First Down

By now, most of you have heard about our day yesterday, but I thought perhaps you'd like more than just the bottom line -- perhaps a glimpse into what yesterday was like. And, besides, blogging is therapeutic for me!

Yesterday started (almost) like any other day. I had breakfast with a friend, which put me at work later than usual. I had a ton of stuff to do that day, starting with going over weekly project updates and finalizing a briefing for a couple of General Officers. I was working on the briefing with a colleague when Cristi called.

I saw the hospital number on the caller ID and figured something was up. It's not unusual to get a call at work, but not on my cell phone, and not since she's been in the hospital. Sure enough, she said, "We may have something." "Should I jump in the car?", I asked, but she told me to hold off for an hour while they ran some initial tests. I was excited, but not convinced; we had been warned about false starts. Two hours later, Cristi called back and reported she still didn't know anything, but she was having lunch with a couple of friends that had come up for the day and would try to find out something when she got back. By then, it was getting to be about 1:00, and I figured I needed to get on the road; the 4-hour time limit we'd ben told about was running out, and I didn't want to miss seeing my little girl before surgery. She told me to make train reservations for late afternoon, and we'd hope for the best.

By 2:00, we still didn't really know, but Cristi figured no news was good news (i.e., the longer we went without hearing something was longer they weren't finding a reason not to use it). Cristi advised me to go ahead and leave work and head to the train station in the hopes that we'd know something before I left. They were tentatively talking a 7:00 surgery. I told my boss, left work, came home, quickly finished packing my suitcase, and headed to the train station. As I got on the Metro, Cristi called and gave me the official word: It was a go! I made a few phone calls to family, boss, and close friends (those were interesting conversations to be sure! I think most were more emotional than I was!) By the time I got to Union Station, I had missed my train, so I had to trade it in for a later ticket. I traded for the 5:05 train and went to wait.

As I waited, I reflected back on the day and how "perfect" it had been. The timing was perfect: I was already scheduled for leave next week. My partner was already prepped to do the majority of the briefing, so I wouldn't be missed. Cristi had friends up there to keep her company to keep her from going crazy. The heart was a perfect match! I was even wearing my Mickey Mouse watch yesterday. How perfect is that? I thought, "Surely this day has been chosen. This is fantastic!" I took time to pray, but my mind was such a flurry of thoughts that all I could muster was, "Remember all those things I've been praying about? Do that!"

Finally, the time came for them to start taking tickets and letting folks on the platform. As I held my ticket and ID and gathered my stuff to move toward the door, my phone rang -- Cristi. Uh-oh. Why was she calling me? We already had a thumbs-up. As I said hello, ticket in hand, moving toward the ticket-taker, I could hear it in her voice: "Where are you?" "Just getting ready to go through the gate", I responded. Then the dreaded report came: "They called it off. Every member of the team agreed unanimously." I fought my way through the crowd to get out of the way so we could talk. How could this happen? We had gotten a thumbs-up! The whole hospital staff was absolutely ecstatic. They were certain, too! This was the perfect day! What happened?

They had run a battery of tests that are practically pro forma; they almost never come back with problems. Unfortunately, Lauren has always preferred to keep the bookies in business. Best we can determine, these tests look for, among other things, potential weird, wild infections that the donor may have had currently or previously, knowingly or unknowingly. It's probably something of that sort that called it off that late in the process, and so definitively.

So, I went back home. After a day of hope, promise, manic excitement, I was exhausted after the plunge from an amazing high to utter disappointment. Lauren was blissfully oblivious, but Cristi was definitely upset. I was okay, just tired. Today, though, was different. My boss gave me the option of staying home or heading to Philadelphia, but I chose to go in. I had work to do (and a briefing to give), and there really wasn't anything else to do. There was no point going to Philadelphia. But I realized my heart just wasn't in it.

The transplant team warned us about false starts, but we had been so close! Why does God allow false starts? Why when we were that far along? Maybe to offer hope after beginning to feel like it would never come? I don't know...At least we know what to expect now. And what of the donor's family? I can't imagine the roller coaster they went through yesterday. I don't know if this problem would have prevented other organs from being used, but if so...Wow! That would have been devastating on top of already losing their child...really tough on closure...I pray God's rich blessing on them. Wow!

Today is another day, though. Cristi and I are doing much better. Lauren's still blissfully oblivious. Another heart will time. We pray it will be sooner rather than later, but it will come on God's time. We will wait, and we will be patient.

Monday, March 2, 2009

Where's That Magic 8-Ball?

It's been a while since I've written, but thankfully, things have been blessedly uneventful. The hospital's had a nasty GI bug going around, so a couple of weeks ago, they took some drastic measures to try to reverse it. They locked down the germ factories previously known as the play room and family lounge, and stationed a large guard at the entrance, turning away all kids and anyone else that breathes funny. Fortunately, as of this writing, they've opened the playroom back up.

Lauren has been healthy through all of this; it's really been great. But while she has been "healthy", there have been some subtle indications that something's just not right. Her resting heart rate has risen since we checked her in 2 months ago. Her pulmonary pressures seem to be creeping up. And, she's coughing more. All of these point toward a gradual onset of heart failure. The doctors have noticed, too, and have begun thinking about how to stay ahead of Lauren, rather than constantly reacting. They've also shared that with us so that we could be prepared, rather than having it sprung on us when it's time.

Lauren is still doing fine. She's in no imminent danger and really nothing to get too concerned about, but some kid ran off with the Magic 8 Ball and hasn't brought it back, so we're left with a few interesting questions but fewer answers: Is her heart, in fact, deteriorating? If so, how fast? Is there anything we can do about it? Will she be able to hold out until we get a heart? Since Lauren's as adept at the unpredictable as Agatha Christie, the doctors decided to do a heart cath -- partially because they like to do them every 3 months on transplant patients and partially to get some more clues to just how well (or lousy) Lauren really is doing.

We got good news. Lauren's heart function is effectively unchanged from December, with one significant difference: Lauren's heart isn't pumping as much blood per beat, but it's beating faster, so it's compensating. So...the doctors are as satisfied as they can be, but they'll certainly keep their eyes on her. Should she start declining, they have a few options. They can, of course, continue fiddling with her heart and diuretic meds. They can also put in a Berlin (mechanical) heart. She can theoretically keep getting up and around with one of those. If breathing becomes more difficult because her heart just can't keep up, they can put her on a ventilator to give her heart a break. Obviously, she couldn't be up and around then.

Lauren's had a fantastic attitude through all of this (except for those I'm-3-years-old-and-I-run-this-place moments). She's learned to ride a tricycle and has enjoyed riding it all over the floor. Check out Cristi's blog for pictures. And, of course, she's charming everyone. Because of that, we're certainly concerned that Lauren's health could decline before a heart became available. I know that God will provide a heart for Lauren on His time. I just continue to pray that Lauren will stay strong until that time comes -- however long that is.

Speaking of that, we did get a bit of good news the other day. Lauren was offered a "back-up heart" (whatever that means; Cristi forgot to ask), but they turned it down due to concerns of infection on the part of the donor. While it wasn't a "real heart" offer, it at least means we're getting high enough on the mythical list to get offered something. After two months and the promise of several more, that's really encouraging.

Many have asked how we're doing. The truth is that, in some ways, it's hard. We don't get to talk every day, and sometimes, the days we do get to, there's not much to talk about, so I feel like I've wasted my opportunity. My trips to Philadelphia seem rushed, like there's just not enough time. I hate that the kids don't get to see Cristi and Lauren regularly. I'm tired of sleeping alone. I worry that Cristi's not eating well or getting enough rest. I worry that Lauren is spending a critical time when she really needs good parenting, getting her way more than she should (i.e., getting spoiled). In other ways, we're doing fine. Our totally unselfish parents are quite literally keeping the household running. We've gotten countless notes and words of encouragement. I don't have to worry about health insurance bills. I do actually get to see Cristi occasionally. If this were a deployment, I wouldn't get to see her for 6+ months. I think what makes this different, though, is that a deployment has a (somewhat) definite end date with little to worry about but enduring. Conversely, we don't know whether this will end tomorrow or next year. Lauren's long-term health is uncertain. But we will make it. Our marriage is incredibly strong. And we do get to talk fairly often. And Lauren will come through transplant splendidly. But some days are just harder than others. Thanks to all for your prayers and words of encouragement. God has blessed us with an incredible circle of support.