Tuesday, December 9, 2008

Results from Lauren's Heart Cath

I know it's been a while since I've posted. I'm really sorry about that. I want to do a post on Addison, but I think it will be harder than even Brennan's...so I've been procrastinating. I've also been struggling with writer's block. Today, I got unblocked. I think most of you have read Lauren's Story that I posted last month. If you haven't, I'd like to encourage you to go back and read it. It will help the rest of this make sense.

Lauren checked herself into the hospital last Wednesday with a 95.7 temperature -- yes, you read that right -- and retching and diarrhea. It turns out that she had a GI bug...and she learned to share. It's become the gift that keeps on giving -- in so many ways! Addison caught it first, then Brennan, then me. Then my parents and grandmother caught it after coming to help take care of the kids while Lauren went to Philadelphia for a couple of procedures. Fortunately, Cristi never caught it, despite the fact that she spent the night next to Lauren's bedside in the hospital.

We had some excitement as we approached the weekend and Lauren was still having diarrhea: Would she get out of the hospital in time to make it to Philadelphia? The complicating factor was that she was still on IV antibiotics and wasn't tolerating her formula. Other than that, Lauren was doing great! We half-jokingly asked if we could just transfer up to Philadelphia to finish that up and still do the procedures. Her cardiologist in Philadelphia went for it! Not only did we go straight from Walter Reed to Children's Hospital of Philadelphia, they flew her via helicopter! Cristi got to go with her...thankfully! If they hadn't let her, I would have felt sorry for whoever had to listen to her cry for Mommy for the 3-4 hours until we could get there. So it all worked out...but I'm still jealous!

BTW, I guess I should tell you what she went to Philadelphia for: She went for a heart catheterization and muscle biopsy. The heart cath directly measures the pressures in the heart to determine whether things are getting better or worse or staying about the same. The muscle biopsy is to try to determine if there are any genetic/mitochondrial issues that could explain why her muscles aren't as strong as they should be.

Lauren had the procedures done today, and all went well; she's recovering as I type. She'll probably be here through Friday. We just need to make sure that she tolerates her formula now. We won't know anything from the muscle biopsy for several months, but we had a long talk with the cardiologist after the cath today. The good news is that, after two full years of no food whatsoever, her lungs are substantially better. Her cardiologist has declared success and said that she can start working on solid foods (no liquids)! That is really fantastic. After having gone so long, it will be interesting to see just how interested in eating she really is.

The more significant news is that her heart function is getting worse and he believes there's nothing else that he can do to help her. The medicines she's on just aren't doing enough...and the high-powered IV medicine that's on her "crash list" may hurt more than it helps if it had to be used. That brought us to the "T" word -- transplant. He wants us to take her home and enjoy Christmas, then bring her back up here in January. He'll put her on some different (IV) medicines to see if that helps and put her on the transplant list.

We always knew this was a possibility (ok...a probability), but didn't expect it to be this soon. The magnitude of the implications are simply daunting. First and foremost, do we want to do this? Heart transplants have come a LONG way over the last 15-20 years...but survival is not a guarantee. It's a 95% survival of the operation and 85% survival at the 5 year point. Those are good odds, but only if it's not your kid, know what I mean? Fortunately, we're at the US's leading hospital for pediatric heart transplants. That makes things much better. Secondly, replacement hearts don't last 90 years. To be fair, we don't know how long hearts that we replace today will last. The best we can do is to say that hearts we replaced 15 years ago are beginning to fail. That begs the question of would we/could we go through this again if we had to. What does Lauren think about all of this. I know she's only 2, but she's a smart girl and has a lot of definite opinions!

Then there are all the minor details of Cristi and I (and the kids) being separated for up to 6 months -- not to mention that I still have to work and the kids are homeschooled and Brennan has medical appointments, etc. Who will take care of them...or how will I? What about their activities that they're involved in? What about family vacations? Will they have to go on hold for half a year because we're spending every weekend in Philly? It might be necessary, but it's hardly fair to the big kids...or to Cristi and Lauren for that matter...to miss out on family outings. We have to move in the spring/summer because the people that own our house are moving back...how to find a house to rent through all of this?

It's a good thing that I went to that ZOE conference back in October -- the one that encouraged me to be fearless. It seems to be what God is trying to teach me this year. After having gone through all we've been through thus far with Lauren, we're not afraid of this path, but to say we're anxious about the secondary effects is a big understatement. But God will provide. He always has, and He will continue to do so. No matter what happens, all will be okay. I'm convinced that God is not done with Lauren. That is a huge comfort. That doesn't mean that this road won't be challenging, but it does mean that we don't have to worry so much. What a comfort it is to know that I don't have to be in charge. God's taken on the hard job. Now I just have to keep reminding myself...


  1. I'm so sorry you guys find yourselves back in the transplant field.

    I can tell you...you won't regret doing the transplant. Lauren will be a completely different baby! Energetic all the time, probably!

    Having been there twice, now, you won't regret it. Just keep doing the transplants for as long as God will allow. That's all you can really do. Someday, doctor's will come up with a way to regenerate your heart and then you won't have to worry about being on a transplant list. That's my hope for me and kidneys too.

    Take care! We all love you guys so much.

    Jill Young

  2. Please know that you have a huge extended family through God and we are all here for you! Please don't hesitate to ask for help, whatever you need we are here for you!

  3. You're so wise to realize you don't have to be in charge. One thing that has comforted me is the realization that God loves my children more than I do...and only wants good for them. He's already put you guys in the exact right location to get the help Lauren needs. Still, it's an agonizing decision....thankfully, you have the very best medical advice! You all are in my prayers always! Jerri