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.

1 comment:

  1. Hey Tim,

    I feel really badly that I didn't know this was all going on! I want you to know I'm adding some prayer warriors for you. I didn't realize my son is close in age to your daughter. Carson turned 3 in January. I hear your worries about the spoiling, but I'm confident you will all recover from that :). Psalm 121.