Our 2008 Christmas letter, reprinted here with permission from the author...
Dear Beloved Snail Mail User (henceforth referred to as BSMU),
This has been another fast-paced action-packed year. We no longer believe it’s possible to have any other kind! This year again saw more predictable unpredictability. Our story opens in January with a hospital stay for Lauren. After raining on three of her siblings’ birthdays over the last two years, Lauren finally got paid back: She spent her own birthday in the hospital. The nurses all know us so well now, though, that they decorated her room for her. Addison and Brennan spent their winter swimming – nothing like getting up at 0430 on a frozen Saturday morning to be at a meet over an hour away by 0700. But hey…at least we get to sleep in until 0515 on weekdays! At one meet, the kids turned in a couple of awesome performances: Brennan won his backstroke race, and Addison finished with a personal best. We sponsored one of Addison’s SOS (JV youth group) activities in February, which meant Brennan got to go, too. They had a blast rock climbing and playing arcade games and Wally ball.
As Spring arrived, we welcomed an early Easter at the crack of dawn – quite literally; we went to sunrise service at church. The sunrise was absolutely beautiful. Nevertheless, having checked that off the list of things not to miss in your lifetime, we look forward to sleeping in next year! We stayed through our normal worship time as well, primarily because they served breakfast, but also because Addison participated in the children’s program and Brennan and Lauren hunted eggs. Later that month, we had a not-so-rare opportunity to visit Philadelphia (home of Children’s Hospital of Philadelphia), with a once-in-a-lifetime opportunity to see the Star Wars exhibit at the Franklin Institute. The whole family enjoyed it, but Tim and Brennan were drooling. We closed out the month of March celebrating as Tim finished up his grueling Exec tour. He’s now moved on as a Program Element Monitor, where he advocates for funding for two programs to senior Air Force, Defense, and Congressional leaders. Trust us…It sounds way more impressive than it really is. They don’t even trust him to touch the billions of dollars he’s responsible for! In April we celebrated Addison’s birthday – at home, with no one in the hospital for a change! We also made our annual journey down to Great Wolf Lodge in Williamsburg to enjoy some waterpark fun long before it was warm enough to think about outdoor fun in the pool. In May, the weather started to warm, and we made a family hiking trip out to the Appalachian Trail in the Blue Ridge Mountains – sort of a recon for the big hike that fall (more on that later). May also took most of the family’s free time with preparation for Defining Moments – a production at church, where people told stories in dramatic ways of a time in their lives when they could clearly see God working in their lives. Addison participated in the puppet show, Cristi participated in a black light-white hands number, Tim sang in the chorus, and Tim, Cristi, and Lauren told Lauren’s story – of her miracle-filled life and how she has touched so many. The whole production was incredibly moving.
Summer brought the changing of the guard – or, rather, the changing of the pediatrician (not much difference in our case!). This was most definitely a significant emotional event! Dr. Richards has become a dear friend, but alas, the Army told her it was time to move. The good news is that we also dearly love our new pediatrician, Dr. Hepps. We decided not to do summer swim team, but joined a pool club instead. The kids had great fun…for the first two weeks. Then, Lauren broke her arm – so bad it required sedation, which meant a trip to Children’s Hospital of Philadelphia. So much for the pool…We finally finished our Civil War study (started the previous fall) with a two-day Petersburg-to-Appomattox tour. We walked the ground of the Petersburg siege, then drove Lee’s retreat route to Appomattox, recounting how the South finally ran out of food, supplies, and options, concluding a great American History lesson. We all learned a lot, but by the time we got to Appomattox, we were about as tired as Lee’s soldiers. We were just glad we got to drive it instead of walking it! Addison spent the 4th of July at church camp, while the rest of us took a flat boat ride up the C&O Canal. The following weekend, we sent Addison and Brennan to Nana & Papa’s in Arkansas for two weeks. They had an absolute blast, including a day at Dollywood in Pigeon Forge, TN. The day after we dropped the kids off, Lauren got sick and spent the next nine days in the PICU at Walter Reed, then got her cast off a couple of days after discharge. So much for that vacation…In August, the entire family made the trip to Arkansas for a week’s vacation. After we returned, Brennan spent three days in the hospital for a video EEG. That, unfortunately, uncovered some epileptic seizure activity. We believe that’s contributing significantly to the emotional and behavioral troubles he’s had, but we’re still working with the doctors on exact diagnosis and treatment. As if all that weren’t enough, Lauren broke her arm…again…the same one…in the same place…Another trip to Philadelphia! Uggh! Well, at least we’re not discriminatory: We’ve made Dr. Hepps work every bit as hard as Dr. Richards – harder in some ways.
We ushered Fall in over Labor Day with our annual family camping trip. We went to Patapsco Valley State Park in Maryland and took another family with us. It couldn’t have been more interesting! Tim left work early that day to make sure we got to the site in time to set up before dark, but it rained all the way there. Being the fearless campers that we are, we tried setting up in the rain, but gave up after we got soaked setting up the picnic pavilion. We gave up that night, drove back home, and tried again the next day. The Panera we had for dinner that night was good, though! The rest of the weekend was great! We played in the river, tried several new camping recipes, roasted marshmallows, played ladder golf, and hiked to a waterfall (almost getting lost in the process)! Cristi’s parents came to visit the next weekend for the big hike. Tim and Chuck had planned all year for an overnight hike along the Appalachian Trail – dubbed the three-state plan because it started in Virginia, moved through Harpers Ferry, WV, and finished in Maryland – a total of 33 miles. They had a great time, but were ready for a shower and soft bed. The family then got back to their routine with the return of homeschooling and swim team practice. The first weekend in October, Lauren broke her arm…her other one…no, she didn’t have the cast off of the first one yet…Another trip to Philadelphia. A couple of weeks later, we made our annual trip to the Smokies for a long weekend with Cristi’s parents and sister. We took all the kids to the Aquarium and Wonder Works one day and spent another full day shopping. What a great, restful weekend! The plan was to leave from there and drive directly to Philadelphia for Lauren’s annual heart catheterization with a muscle biopsy as an added bonus. Unfortunately, Lauren had other plans. We wound up driving into Knoxville, to East Tennessee Children’s Hospital, where she spent the next three days in their PICU. Big kudos to Dr. Brinkmann and his staff for fantastic care and great hospitality. We couldn’t have asked for more, considering they knew nothing of Lauren or her many issues!
We tried something new for Halloween this year: Instead of trick-or-treating, Brennan and Tim went on an all-guys camping retreat, while the girls went out to eat at Cheesecake Factory. Brennan had fun enjoying the great outdoors and playing with his friends. Tim’s still trying to forget fishing his fishing pole out of the lake. Addison, meanwhile, got to trade a bunch of mediocre candy for a gigantic slice of cheesecake. We finished up our year with Tim’s notification that he was selected to attend the National Defense Intelligence College at Bolling AFB next year. This was a win-win for us, because it counts as in-residence Intermediate Service School for Tim (a significant milestone in his career), and we get to keep Lauren’s care here for another year. Of course, after five years in one place, we’ll feel less like nomads and more like natives.
This year has been every bit as fast-paced as last year. We now believe it’s our norm. Despite a year with over 175 doctor appointments and 9 hospital stays totaling 48 days, we’ve tried to keep family life as normal as possible. Cristi continues to struggle with diabetes, but is somewhat stable on oral medicines (stable in terms of diabetes…not mentally!). All seriousness aside, Cristi is the engine that keeps this family running – making it to appointments, kids’ activities, helping run the nursery at church, doing school…oh, and occasionally a night scrapbooking or eating with the girls.
Wait…This just in…Following the first publishing of this letter, Lauren had her annual heart catheterization at Philadelphia. The good news is that her cardiologist has finally declared victory on her lungs. She’ll get to start eating some real food in the near future! On the other side, her heart is steadily deteriorating, and he believes there’s nothing more he can do for her. It’s time to talk transplant. That’s obviously heavy news, but we knew it was an eventual probability. He told us to take her home and enjoy Christmas, then bring her back to the hospital in January for an extended vacation. Lauren (and Cristi) will move in up there and await a transplant. It could be anywhere from a couple of days to six months. That means next year promises to be very challenging for the Schwamb clan, but with God’s help, we will persevere…and we will be blessed. Tim started a blog this year just to share our journey and our many adventures. If you’re interested, check it out. We think the title is very apropos: http://simplefamilycomplexlife.blogspot.com. Of course, we also continue updating Lauren’s carepages with significant events (www.carepages.com – page name: LaurenSchwamb, all one word).
For our BSMUs, thanks for letting us share our highs and lows of 2008 with you. God has blessed us immeasurably through both. We hope your year has been awesome, with next year shaping up to be even better. We pray God’s richest blessings and peace upon you during this Christmas season.
Tim, Cristi, Addison, Brennan, & Lauren Schwamb
Wednesday, December 24, 2008
Monday, December 22, 2008
Hope for Brennan, But Beyond My Comfort Zone
I promised when I kicked off this blog to keep you updated on Brennan's journey through a medical morass arguably as complicated as Lauren's, so I wanted to provide an update. You may recall from my previous post on Brennan, that it seems as if we're trying to put together a puzzle of candy spilled on the floor -- with no box picture to look at -- and occasionally, we find two pieces that go together. Last week, we found a couple more pieces. Whether they fit in this puzzle or not is yet to be determined, but it looks promising so far.
Brennan's psychiatrist has been meeting privately with Brennan every week over the last several months. He called last week and had a long conversation with Cristi. Well over a year after getting the bipolar diagnosis from the psychiatrist we fired, his current psychiatrist told us he's no longer confident of that diagnosis. He believes instead that it could be anxiety. We think there's a good chance he's right. Unfortunately, we're at a point that we want to believe that we're on to something, so it's not always easy to look at things objectively -- especially when you're dealing with an inexact science. I mean, if you go on a witch hunt, you're gonna find a witch, right? Let me share how we now believe some of these pieces might fit together.
Brennan gets frustrated easily, and avoids adversity or challenges at all costs. He won't play video games or build with legos, or play with Rescue Heroes, or anthing else most normal boys his age do. He basically doesn't like doing anything -- no, really! He always wants to know what to expect -- what's coming next. He's also a very poor problem solver (except for math -- he can do in his head what most of us require paper for) -- meaning if he gets something in his head about how things will happen, he can't then adjust (i.e., re-problem-solve) when things change on the fly. For instance, at lunch, Addison got down two glasses -- one for her and one for Cristi. At the same time, Brennan decided he wanted chocolate milk and went over to get some. Addison picked up the glasses and tried to move out of the way to give Brennan room to get his glass and fill it. Brennan thought one of those glasses was for him and went ballistic when Addison "ran off with it". When things didn't go the way he expected them to, he couldn't figure out why that might have happened, how to determine why that might have happened, or come up with an alternate plan based on this new information.
Perhaps it is anxiety. He does seem to always want to know what's coming next. He struggles with his school work -- reading, remembering concepts, handwriting, etc. At times, he gives us subtle indications that he feels inferior to Addison (e.g., "She can read better than I can"). Maybe poor problem-solving skills, insecurity about reading, poor short-term memory, etc. is really making him nervous. If so, his outward signs are subtle.
Assuming his psychiatrist is right, there is help -- or at least something promising to try. There's certainly medication that is primarily suited for anxiety (vs. the bipolar medicine he's been on). Perhaps more importantly, though, different (better?) parenting skills could help. The psychiatrist suggested that we work on briefing Brennan on the plan of the day, and talking him through what we're doing. We should also help him (preemptively) talk through the situations he's facing to help him figure out how to appropriately deal with them.
That all sounds very simple and obvious, doesn't it? The problem is that Cristi and I aren't talkers...just the facts, ma'am. My mother used to talk about everything (what we were doing, why we were doing it, who had decided we were doing it, what we were doing next, asking me what my opinion was, how that might impact the situation...) and then remind me of those things we'd already discussed. It drove me up the wall! For the record, it's not that I don't love my mother; we all have our idiosyncrasies, including me -- and she did always manage to know what was going on in my life and convey to me that she cared about what was going on with me...But I don't do that. The very thought of doing it just makes me cringe. Cristi is the same way. We're big boys and girls, though. We will have to retrain ourselves, but we'll take our Robitussin with merely a scowl on our face, and without complaining. If it will help Brennan, it will be worth it! Maybe that's why he's always been so good around my parents...
Of course there's no silver bullet here, and there are still lots of questions. We still have the problem of epileptic activity in the part of the brain that controls emotion and memory. (Sidebar: I incorrectly stated last time that it was seizures. Seizures have never been seen -- just abnormal brain waves, aka epileptic activity). How does that play in? What about the sensory-seeking behavior and the educational issues? Will new medicine help with the anxiety? I know what end state we're looking for as parents, but what end state are we hoping for clinically? At least we appear to be on to something new that holds promise. We continue to plug along, trying to put the pieces together, and using Brennan's doctors to help us. We pray that eventually we'll piece together the Hershey's bar with the peppermint and Jolly Rancher, and be able to give Brennan some relief from the demons plaguing him.
Brennan's psychiatrist has been meeting privately with Brennan every week over the last several months. He called last week and had a long conversation with Cristi. Well over a year after getting the bipolar diagnosis from the psychiatrist we fired, his current psychiatrist told us he's no longer confident of that diagnosis. He believes instead that it could be anxiety. We think there's a good chance he's right. Unfortunately, we're at a point that we want to believe that we're on to something, so it's not always easy to look at things objectively -- especially when you're dealing with an inexact science. I mean, if you go on a witch hunt, you're gonna find a witch, right? Let me share how we now believe some of these pieces might fit together.
Brennan gets frustrated easily, and avoids adversity or challenges at all costs. He won't play video games or build with legos, or play with Rescue Heroes, or anthing else most normal boys his age do. He basically doesn't like doing anything -- no, really! He always wants to know what to expect -- what's coming next. He's also a very poor problem solver (except for math -- he can do in his head what most of us require paper for) -- meaning if he gets something in his head about how things will happen, he can't then adjust (i.e., re-problem-solve) when things change on the fly. For instance, at lunch, Addison got down two glasses -- one for her and one for Cristi. At the same time, Brennan decided he wanted chocolate milk and went over to get some. Addison picked up the glasses and tried to move out of the way to give Brennan room to get his glass and fill it. Brennan thought one of those glasses was for him and went ballistic when Addison "ran off with it". When things didn't go the way he expected them to, he couldn't figure out why that might have happened, how to determine why that might have happened, or come up with an alternate plan based on this new information.
Perhaps it is anxiety. He does seem to always want to know what's coming next. He struggles with his school work -- reading, remembering concepts, handwriting, etc. At times, he gives us subtle indications that he feels inferior to Addison (e.g., "She can read better than I can"). Maybe poor problem-solving skills, insecurity about reading, poor short-term memory, etc. is really making him nervous. If so, his outward signs are subtle.
Assuming his psychiatrist is right, there is help -- or at least something promising to try. There's certainly medication that is primarily suited for anxiety (vs. the bipolar medicine he's been on). Perhaps more importantly, though, different (better?) parenting skills could help. The psychiatrist suggested that we work on briefing Brennan on the plan of the day, and talking him through what we're doing. We should also help him (preemptively) talk through the situations he's facing to help him figure out how to appropriately deal with them.
That all sounds very simple and obvious, doesn't it? The problem is that Cristi and I aren't talkers...just the facts, ma'am. My mother used to talk about everything (what we were doing, why we were doing it, who had decided we were doing it, what we were doing next, asking me what my opinion was, how that might impact the situation...) and then remind me of those things we'd already discussed. It drove me up the wall! For the record, it's not that I don't love my mother; we all have our idiosyncrasies, including me -- and she did always manage to know what was going on in my life and convey to me that she cared about what was going on with me...But I don't do that. The very thought of doing it just makes me cringe. Cristi is the same way. We're big boys and girls, though. We will have to retrain ourselves, but we'll take our Robitussin with merely a scowl on our face, and without complaining. If it will help Brennan, it will be worth it! Maybe that's why he's always been so good around my parents...
Of course there's no silver bullet here, and there are still lots of questions. We still have the problem of epileptic activity in the part of the brain that controls emotion and memory. (Sidebar: I incorrectly stated last time that it was seizures. Seizures have never been seen -- just abnormal brain waves, aka epileptic activity). How does that play in? What about the sensory-seeking behavior and the educational issues? Will new medicine help with the anxiety? I know what end state we're looking for as parents, but what end state are we hoping for clinically? At least we appear to be on to something new that holds promise. We continue to plug along, trying to put the pieces together, and using Brennan's doctors to help us. We pray that eventually we'll piece together the Hershey's bar with the peppermint and Jolly Rancher, and be able to give Brennan some relief from the demons plaguing him.
Two Sides to Every Coin
We've decided to do the heart transplant. I guess there never really was any doubt. Having known this was a possibility for quite a while, I think we had already consciously or subconsciously made up our mind. It took me a couple of "signs" to show me this was indeed the path to take. Now, it was just a matter of actually voicing it.
It occurred to me the other day, though, that it takes two to tango. The new year always symbolically promises new hope and new life. That rings especially true for Lauren and the rest of us this year as we pray for resounding success of the transplant, and that she'll be even more normal than she has fought to be thus far. We'll take Lauren up to Philadelphia on January 6th, and then begins the waiting game.
There are other cast members in this drama that's supposed to have a Disney-perfect happy ending, though...but for them, it won't -- that's the family that will provide the heart. It occurred to me that, even right now -- at the happiest time of the year -- they most likely have no idea that they will give my child life by losing their own child. At a time when I'm both excited and anxious about what the future holds for my little girl, the thought that it must be a life for a life tears my heart out (for once, no pun intended).
Please pray for this family -- whoever they are. Pray that, when the time comes, God will wrap His arms around them and give them peace and comfort through this gift in a way that I can't fathom. Pray that they will somehow understand how grateful we will be to have a little girl whose heart works as well (physically) as it is big (figuratively).
It occurred to me the other day, though, that it takes two to tango. The new year always symbolically promises new hope and new life. That rings especially true for Lauren and the rest of us this year as we pray for resounding success of the transplant, and that she'll be even more normal than she has fought to be thus far. We'll take Lauren up to Philadelphia on January 6th, and then begins the waiting game.
There are other cast members in this drama that's supposed to have a Disney-perfect happy ending, though...but for them, it won't -- that's the family that will provide the heart. It occurred to me that, even right now -- at the happiest time of the year -- they most likely have no idea that they will give my child life by losing their own child. At a time when I'm both excited and anxious about what the future holds for my little girl, the thought that it must be a life for a life tears my heart out (for once, no pun intended).
Please pray for this family -- whoever they are. Pray that, when the time comes, God will wrap His arms around them and give them peace and comfort through this gift in a way that I can't fathom. Pray that they will somehow understand how grateful we will be to have a little girl whose heart works as well (physically) as it is big (figuratively).
Wednesday, December 10, 2008
Meet Addison
By now, you're familiar with Lauren and Brennan's stories, but I haven't introduced you to Addison, our oldest -- and she definitely shouldn't be left out! Addison is an amazing little girl in her own right, but unlike the other two, not because of health issues.Addison was born while we lived in Germany. While we were there, we traveled all over Europe and dragged her with us. She's stood atop Roman ruins, seen the gargoyles of the Notre Dame up close, toured Mad Ludwig's Neuschwanstein castle that inspired the Disney Cinderella castle, and been to a traditional Christmas market in the snow...and doesn't remember a bit of it.
She started reading when she was about 4. In Kindergarten once, when the teacher had lost her voice, she asked Addison to read the Story Time story to the class. Now she reads anything she can get her hands on -- and fast. She's read most of the Harry Potter books in the space of about 2 days each. In the middle of her first grade year, we made the reluctant decision to start homeschooling, because we had lost confidence with the school and her teacher (that's an entirely different long story!). She absolutely loved it, and so we've never looked back! She has really enjoyed her history lessons. She really liked the Civil War study we did last year, and we had some pretty interesting discussions on military and political strategy as we toured the ten largest battlefields in the Eastern Theater.
Addison actually reminds me a lot of her mother. In addition to reading everything, she likes her space. Her bedroom is in the basement of the house, and she would be just fine to go down and hide in her cave and rarely come up for air. If she had a refrigerator down there, I'm not sure if we'd ever see her again! Unfortunately, like her mother, this also translates into not being overly affectionate. This has been one of our challenges over the years since I am a very huggy, affectionate person -- as is her brother (who frequently doesn't catch the warning signs to stop). In fact, my perception is that Addison and I were never overly close until I deployed for 4 months in 2004. Strangely -- and happily -- for me, when I got back, our relationship had changed. She's still not a huggy, affectionate person -- and never will be -- but we are tight now...and I like it!
Ironically, even though she craves all-by-myself time, she's a very social person. She's friendly with everyone, and very popular. She loves spending time with her friends...as long as she gets the decompression time by herself afterward. She loves particpating in the church's kids' programs, like puppet shows and choreography numbers. She's also a fashion expert. It's pretty sad when parents consult their kids on what clothes to buy...
I'm not sure I know a more responsible 10-year-old, either -- another quality like her mother. Because we're frequently short on time, we don't always have the time to think through everything like we would like -- simple things, like reminding the kids to take stuff to do with them as we're on our way out the door, or reminding her to learn her memory verses for church, or reminding her to take her medicine every day. Addison's always on top of it. While that's been a great help to us, we've come to rely on it...and expect it...and that makes me sad. She's been put through a lot for a 10-year-old. She didn't ask for this, but she's been given this lot anyway. Don't get me wrong, Brennan's had to deal with a lot as well, but we've necessarily shouldered a lot of responsibility on Addison. And, unfortunately, just like the military, if you do well at something, you get more of it. She has truly been a Godsend, though -- quite literally. She does it all, complaining only minimally, and doesn't appear to be emotionally scarred. God is doing a great work in her, too. I can only imagine how well grounded she will be as she grows up. I could not be prouder of her!
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...
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...
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