Thursday, January 8, 2009

Starting Down a Road...

After planning and packing for what could rival a small military operation, Cristi and Lauren left DC for Philadelphia Tuesday morning. I followed suit Tuesday afternoon after the Presidential ceremony.

Lauren checked into the Cardiac Intensive Care Unit (CICU), where they gave her an IV, then put her on a new IV heart medicine (Milrinone), with the intent to step it up to a specified level. At that level, it should help her heart at least temporarily, and places her in the highest category of need for a transplant. Yesterday, after much finagling, they put a PICC line (basically a super IV that goes from her arm, up to her shoulder, and back down almost to her heart) in her. That will allow them to get blood from her any time they want/need it and preclude Lauren from getting poked every time – something Lauren is certainly happy about.

We also met with most of the transplant team across several meetings yesterday and today. They’ve really got the full spectrum of support – from the obvious cardiac transplant docs and nurses, to nurse coordinator (that actually rides point on coordinating getting the donor heart and interfacing with us on the process itself), to psychologists, social workers, and child life specialists. You wouldn’t think about needing all of that, but I think each of them will be invaluable at least in some small way at some point during this journey. The psychologist and child life specialists will work on getting Lauren on a routine that matches her home routine to the maximum extent possible – including getting her up and dressed in the morning, taking naps at regular time, and NOT watching movies all day everyday. They’re also getting her set up with regular play room activities such as art and music, and will continue her physical therapy. The psychologist is there for advice/help on how to keep Lauren from becoming so needy/clingy by the time discharge comes that she’s irreversibly altered her personality (i.e., make sure she understands she can play by herself and doesn’t always get her way!). Oh, the psychologist is also there to do a psychological evaluation on us to determine whether we can handle being transplant parents. Cristi hopes my results won’t derail the process…prayers please! :-) The social worker is there to help us with anything that comes up in terms of insurance liaison, housing for me/Cristi, etc. The whole team spent quite a bit of time with us yesterday and today working to put us at ease and help us understand the process and promised that we’d get to know them all quite well. As we concluded our final meeting with one of the attending cardiac transplant docs this afternoon, we got official word that Lauren had been listed. The journey begins…

This morning they moved Lauren to her private room on the Cardiac Care Unit (aka the normal cardiac ward). She went to music time in the play room (officially called “music therapy” – a term I find quite humorous), but really acted kinda puny today. She was coughing a lot today, perhaps like her feeds weren’t setting well. We’re not sure whether she’s getting a cold, or maybe just a little nervous, adjusting to a somewhat-familiar environment during a time when she’s not “sick”. I could actually see myself in her: She’s very out-going and friendly, but initially shy in new and unfamiliar situations/environs. It could also be in part due to some anemia she's been struggling with lately. It hasn't been much to be concerned about until now, but her red blood cell count is trending downward. I hated to leave her not knowing…but, alas, I must return to work tomorrow…

I really felt pretty good all weekend – ominously so – as if I didn’t have a care in the world, or as if it was just another hospital stay (okay, that already makes me a sad case…)…Today, it hit me, though. I think it’s because I finally had to deal with the fact that I was leaving “my other world”, having to return to the reality of what was ahead. Cristi and I will be separated for the indefinite future – she with Lauren, and me with the big kids (with some big assistance from our parents). Cristi likened it to her deploying – a totally unfair scenario, I have to say! :-) Suddenly, we’re entering a period when I could be called at any time (gotta get my bag packed – prepare to deploy on a moment’s notice), where Cristi and I are separated, and where I have to be responsible for Brennan’s appointments and work and scheduling time to get to Philadelphia with and/or without the kids, to manage the stress levels of the kids and myself…and worrying about Cristi actually taking care of herself and getting real food. We’re really entering a scary time of unknowns – or as our preacher put it once in a sermon that has stuck with us so vividly: Going, not knowing…

But as I contemplate the feelings I’m having, I realize it’s not unlike the feelings I have PCSing (moving to a new base for those non-military types) or just changing jobs within the same organization. I know it sounds silly or incomprehensible to compare the two, but I get like that when circumstances change. Remember what I said about Lauren being shy in new situations? After a couple of days, I figure out that, yes, I really can do this, that I’m not in a situation that I will fail miserably, and it just becomes business as usual. I’m convinced that will happen in this case, too. As I’ve said before, I’m still convinced that God has great things ahead for Lauren…so why worry? No matter what happens – no matter what – God is still God, and I will follow Him. I will be fearless. And I will teach my family to be fearless, too.

P.S. We’ve already had several friends that have offered to visit, send care packages, help out however needed, etc. That’s incredibly encouraging to us (BTW, PLEASE don’t feel pressured to send something). It’s also incredibly strengthening to hear how many people are praying for and thinking about our little girl. From the deepest part of me, thank you! Just one more way God is good!


  1. Tim, Please, please know we are available at a moments notice if you need us! Even in the middle of the night.

    We admire your courage and trust in God. We will continue to pray for you!

  2. I'm keeping your family in my prayers, Tim.

  3.'ve adjusted well! Congrats on getting Lauren on that list!

    I will think of you often. I love how you liken this experience to another "deployment". That's a great way to put it. And Lord Willing, it will happen fast and Lauren will be home and you will have a new bundle of joy in your arms again!

  4. praying a bunch for you! Keep in touch! Let us know how we can help! (after the inauguration I should have a random day or so that I can go and "relieve" Christy for a day!) stay tuned!