On being displaced...

To displace: 

to force (someone) to leave their home, typically because of war, persecution, or natural disaster. 

We're officially displaced. 

Of course, we're not displaced in the way most of us think of it, in a war-torn country in a camp somewhere, with no belongings of our own. 

And yet, displaced we are. Ah, such a 1st world problem. To be "displaced" in the comforts of a suite in a beautiful hotel that provides breakfast and cocktail hour every day. We are so very blessed to be taken care of, to have a temporary place to stay.

But, even so, being displaced is hard. So, so hard. On so many levels.

We have lost so much. We have some of our clothes (almost all were salvageable, but most are with the drycleaning company at the moment, so we have only a portion actually with us), but the vast majority of our belongings have been declared a total loss. What they are going to attempt to salvage has been removed to the salvage company's warehouse. The only furniture they're going to attempt to salvage are the kids' bunk beds, our dining room table, our grandfather clock, the piano and the kids' desk. All of our other furniture will have to be replaced. 

So will our mattresses. Dusk and I just purchased our mattress in December. We briefly considered taking it back to COSTCO and saying "It just has this weird smoke smell. We just can't figure out where it's coming from." COSTCO will let you return anything, right?!? Obviously kidding, but if you've read our blog for any length of time, you know humor is how we get through.

So, right now, we're sleeping in beds that aren't ours, with linens that aren't ours, listening to sounds that aren't familiar to us. We're waking up earlier to eat breakfast in a hotel dining room and drive new routes to the kids' schools. We don't have a kitchenette, so the kids' are getting Luncheables in their lunches every day and dinner is drive-throughs or take-out.  For the mom who meticulously planned out all of our healthy, home cooked meals for an entire month at a time, and for a family who is used to living on fresh produce, this is hard. Every new sound, new smell, unfamiliar meal, and different driving route is a subtle reminder that this isn't our home.

The kids are faring well, considering. We're trying to keep their routines...

...including working on AWANA verses 

 

...and making it to our softball and t-ball games

But it's so hard when every fiber of their little beings is crying out "I'm in a hotel! With a pool! We're on vacation!!!" 

Emotionally, they seem to be handling things really well. But then, Bodie woke up almost every hour last night, screaming and crying, clearly having nightmares. When we asked him this morning, he couldn't remember what his bad dreams were about, but did remember good dreams about fire trucks. I can only imagine he was reliving the night of the fire. It made my mama's heart so sad.

The uncertainty of the future compounds everything. We're working very hard to find a place to live (we have 2 realtors who've been so kindly helping us), but as of yet, are still empty handed. We've played this real estate shuffle before, the dance where you feel like you will never find anything, and then, suddenly, a new listing pops up, it's perfect for you, you grab it and end up in the best possible home for you. But we're not to that point where the listing has popped up yet. We're currently in the utter depressing and demoralizing phase where we feel like we will be living in this hotel and eating take out forever.

This, all of this, is just poignant reminders that we are indeed displaced. The discomfort, the utter starkness of the reality that this is NOT our home hits us every moment of waking hour. The longing for the comforts of our own home and belongings runs so deep. 

It is such an enormous reminder to me that this is how we should feel every day, as Christians. This is NOT our home. We should feel uncomfortable. We should feel a longing toward our true home, in Heaven, at the right hand of God. And, if we don't, perhaps we're not displaced enough. Perhaps we've grown too complacent in our Western world. I love when God whispers these lessons to me amidst the storms of life. A gentle reminder that he is molding me, and our family, and drawing us closer to Him. Forcing us to rely on His promises.

And so, in all of this, this displacement and uncertainty, we wait upon the Lord and His next steps. 

And we hope, I mean really really really hope, His plans include a rental home soon. 

In the meantime, you can support us by praying for us. Pray that we find a home, pray for peace for us in this process, pray for peace for the kids, pray for sanity for Amy (as our friend Karin so brilliantly pointed out when she came to visit us yesterday -

Since we went basically from Bodie's hospitalization straight into the fire, Bodie and I have really been displaced for 2 weeks already. I'm kinda going stir crazy. Pray for patience for me during this time.)

I'll sign off with this thought.

6 years ago, I prayed that God would use our family in the sanctity of life movement. 

2 months later, we became pregnant with a baby who had down syndrome and would pass away in utero.

2 months after that, we became pregnant with Bodie.

Both times, we were unequivocally advised, multiple times, to terminate the pregnancy.

This past January, I prayed that God would help me learn to simplify and reprioritize our lives and declutter.

2 months later, our house burned down.

Next time, I'm praying to win the lottery.

Surely the presence of the Lord is in this place...

The last couple of days have been rough. Excruciating, actually. It is impossible to accurately describe in words the extent of the damage to our home. I would say we were naive initially, in assuming that most of our belongings would be salvageable. As we begin the process of inventorying everything, we are hearing the words "total loss" again and again. 

Most of our furniture will have to be replaced, as well as mattresses, everything in the bathrooms, most of our kitchen items and lots of toys and other odds and ends.  That's to say nothing of the attic items, which we inventoried ourselves this morning. That was hard. So little, so very, very little was salveagable. 

This was the contents of our attic - in the middle are the items that we can definitely tell are destroyed and which will need to be formally inventoried. To the left are debris, roof parts, and items we couldn't determine what they were since they were burned so badly. Beyond this (and not in the picture) were the 3 or so boxes of things we're asking them to attempt to salvage if possible, which include my wedding dress, completely melted into the garmet bag. 

The loss is staggering. We won't know the extent of the loss until the final inventory is done, but it's significant. 

And the house. Oh, our house. The sweet little house that has taught our babies to walk, and rung with the echoes of their laughter and screams. The house where Sierra learned to read and Bodie learned to crawl. Their bathroom with monkeys and sweet, happy scents and memories of their splashing and laughing. The walls where Dusk has painstakingly painted every square inch. The kitchen where I have spent hours baking birthday cakes and classroom treats. The living room where Bodie and his friends ripped open his birthday presents just 2 weeks ago. All a total loss. Maybe not today, but in the coming weeks. 

We have been told the entire house will have to be gutted. It looks like a war zone. Ceilings are ripped open throughout the house, walls are punched through, both bedrooms and the office are covered with ash and chunks of ceiling. The office isn't even safe to go into at this point. 

(this is the office; you can see the ceiling is completely gone.)

The kitchen cabinets may be salvageable, but the countertops will be lost and the walls will have to come down. How far we don't know - it depends on the extent of the fire. 

The floors throughout the house are covered in a mixture of mud and ash and will all have to be replaced. The living room, which initially looked ok, was covered in huge sheets of ceiling by late Monday night. It is impossible to explain what it's like to stand in the home you have loved and built your family within, and watch it literally coming down around you. 

What's left of the kids' bathroom. 

Just.so.demoralizing.

We haven't let the kids into the house. We don't want them to remember their house this way. Heck, Dusk and I don't want to remember our house this way. It's awful. 

Like I said, this week has been tough. We have cried many tears over our losses.

And yet, even so, in the midst of such sadness, we have felt such grace, such miracles that can only be the hand of God.

Many have asked how the fire started. 

It started at 9:30pm or so on Saturday night. Dusk was working in the back and I was working in the kitchen. We had put the kids to bed, and Sierra had gone right to sleep, but Bodie was refusing to. He was feeling squirrely and had been in and out of bed every 10 minutes for over an hour. He was insisting on keeping their bedroom door open, which we don't usually do. I finally gave up and told him he could sleep in our bed.

As I was lying him down, I smelled something burning. I didn't think much of it, since it honestly smelled like our dishwasher smells when plastic utensils get caught where they shouldn't be. But I walked into the kids' room and realized it was coming from their bathroom, which is fully enclosed in their bedroom. I saw sparks coming out of their fan in their bathroom (it was a light/fan vent/heater combo, but only the fan was on).

I turned it off and realized the sparks were still coming and ran outside to get Dusk. By the time we got back in (10 seconds?), flames were coming out of the fan. He yelled for me to grab the garden hose and by the time I got it to him, he realized it wasn't putting it out and we were in trouble. He told me to call 911. By that time, the kids' bedroom was filled with smoke. I did, and then grabbed the kids, my purse, my laptop and Bodie's meds (I didn't know what was about to go down and didn't want to scramble to get Bodie's meds in the morning) and got out of the house. I told the kids to grab their favorite stuffed animals on the way out and come. I didn't realize until we got out of the house that they hadn't grabbed them. 

We got out of the house as the fire trucks were arriving. Thank God for the kindness of our neighbors and friends who took the kids, and helped Dusk and I as we helplessly stood by and watched our house engulfed in flames. The whole experience was surreal, to put it mildly. 

But even so, so many blessings.

Thank God the fire happened on Saturday night, when I was home, and not 2 nights later, when I was supposed to be at a friend's and Dusk may have been out in the back working as the kids' slept, and they may have slept through the fire before Dusk knew what was going on. Dusk and I cannot even allow ourselves to think of how much worse this could have been, how the unthinkable could have happened. How close we came.

Thank God Bodie was refusing to go to bed and insisting on leaving their bedroom door open. Otherwise, who knows how long it would have been before I would have smelled the burning. But because he was up and insisting on his door being open, I smelled it right when the fire started. That fire spread so fast that truly, every second counted. We're so grateful Bodie insisted on having that door open.

Thank God we were not hurt. Not even a little bit.

Thank God Dusk was able to grab  expensive equipment he had in the attic on his way out of the house. Thank God he had the wherewithal to grab equipment he was holding for clients.

Thank God for the kindness of the incredible LAFD firefighters, who, once they had the fire under control, asked me what specifically we needed out of the house. And who went into the kids room, and came back with exactly what I had asked for - Sierra's tigger and her American Girl doll, and Bodie's Momo monkey and Joshie Doll. And clothes for the kids, and jackets and shoes for Dusk and I, who were literally wandering the streets in our wet socks.

Thank God the kids' most prized possessions, and all of their clothes, survived the fire completely unscathed. There's no explanation for it, to be honest. Tigger and Sierra's doll were sitting on her bed, in a bedroom filled with smoke. And yet, not even a hint of smoke on them. Same with Bodie's special possessions. I know they're just toys, but even so, they're their special things, their comfort items. This is so hard for the kids. Heck, it's hard on Dusk and I, but we have a lifetime of experiences to deal with this - we know what box to put it in. Our kids have 4 and almost 7 years of lifetime experiences. They don't know what to do with this. So we are so grateful that they have their comfort items to help them through.

Thank God for amazing friends, like Bill, who was by Dusk's side the night of the fire, and at our house early the morning after the fire, helping Dusk move our refrigerators to avoid defrosting, bring coffee and breakfast, and just plain being there for Dusk. And the Risso's, who took our kids in and loved on them the night of the fire, opened their doors to us, and took Bodie again Monday so that I could be at the property with Dusk. And Denise, our sweet neighbor who took load after load of laundry from us and has been endlessly washing for us to get smoke out of everything she can. And Faith, who took both kids all day Sunday - and spent all day with me today, helping inventory our entire attic (no easy task), and sort through clothes, and bring us all kinds of food - and just love on me.

Thank God for schedules aligning just perfectly so that Johnny was in town, Jeff hadn't left town yet and John was available, because these 3 guys saved us in a million different ways the past few days. Oh.my.goodness. I can never thank them enough for what they did for us. Between Johnny sleeping overnight on the property to keep his eye on the property, to Jeff helping me search around the debris and ash in the kids' bedroom to find Bodie's missing cleat, to all three of them helping Dusk in the wee hours of the morning finish a client's mix, these guys are beyond amazing. 

Dusk and Jeff finishing a mix together, 2 days after the house burned down. 

Thank God our attic burned and not our whole house. We could SO easily have lost EVERYTHING. And we did lose a lot. But yet, so so so much was salvaged. Truthfully, most of what we lost in the attic was stored stuff we should have pared down long ago. Stuff we thought we needed, but not really. 

Thank God we have amazing insurance, who are already on the ball, encouraging us to find short-term housing and a home rental for the longer term. An insurance company who has already gotten the ball rolling on restoration and is working so compassionately with us to help us navigate this incredibly difficult path. 

So, this journey is tough. It's awful actually. And it's been filled with lots of tough moments. Lots of tears. But even so, we are beyond grateful for God's hand on our family. We have been spared so, so much.

So, at the end of the day, our hearts are full and so very grateful.

Even in the darkness, we feel his light.

So completely. 

It's just stuff

 

So...we thought we learned our lesson last year about stuff just being "stuff." But apparently, we still had more to learn.

I had a long blogpost written out, but my phone ate it. The short story is that our attic caught fire last night due to something shorting with the vent fan in the kids' bathroom. It was confined to the attic, but we lost most of what was stored in the attic and they tore out the ceiling in most of the house to get to the fire. Structurally, there is significant damage to the house and we will looking for temporary housing for months. Our important belongings are safe, as are we. The rest is just stuff.

We appreciate prayers as we navigate this very scary journey, particularly peace for the kids as they saw the house burning and are obviously Affected.

Bodie: 1. EAT: 0.

I realized I typed yesterday's post so quickly I may given the wrong impression! Bodie's team didn't discharge him solely because we had a softball game to get to - but, they did know we really wanted to try to be discharged in time for our weekend events. Once they realized he was safe to be discharged, they worked really hard to monitor him as long as possible but still allow us to be discharged in time for Sierra's softball game - and Bodie's t-ball Opening Ceremonies this morning. We are enormously grateful for that. 

After Thursday's up and down day of being in and out of EAT, it felt like home was still pretty far off. But then, something about the Flecanaide and Atenelol finally worked its magic and he was out of EAT from Thursday night through Friday morning. He went back into it as he was due for his meds. At that time, Bodie's EP decided it was safest to increase his beta blocker, give him his morning meds, watch him for the day and send him home late afternoon and manage any remaining med titration outpatient. 

An hour later, Bodie popped out of EAT - and has remained out since!!! It 100% confirmed the decision to discharge us yesterday. What an enormous blessing for us!

We don't know how long he'll stay out of EAT. We're hesitant to be too optimistic, considering we have thought twice now that we conquered his EAT, only to have it return within a week or 2. But both of those were ablations, where they find the one "focus" of his heart that is causing the arrhythmia and cauterize it, stopping the arrhythmia. But, sometimes (and definitely in Bodie's case), if you stop one focus, another one will just pop up. That's what happened both times to Bodie. 

Medication works a little differently, because it changes how the heart responds in total, rather than ust one spot. So, yes, the EAT may come back (and likely will as he grows), but will generally mean we need to titrate up his meds to bring it back under control, as opposed to any surgical intervention. The fact that Bodie's body was so responsive to this new medication is a fantastic sign. It means that we may have just found the perfect cocktail for our little man.

So, I would say, for the first time in several years, we feel hopeful that we have a handle on his EAT. For today, Bodie has definitely one-upped the EAT. We'll take that.

 Please pray that his EAT remains under control. 

We continue to give thanks for a medical team that can manage Bodie's incredibly complex cardiac needs, and equally important social needs - like sister's first softball game last night...and his own T-Ball opening ceremonies this morning.

This last pic is of Bodie and his buddy, Tyler. Tyler is also 4 and also has HLHS and had his Fontan a couple of weeks before Bodie this past summer, also at CHLA! 

If you had told me when Bodie was diagnosed that he'd someday play t-ball, at all, let alone with another kiddo with the same heart condition, I'd never have believed you! This whole CHD journey is just amazing. I love these boys! They're such fighters!

Just in time

Oh how I love a medical team who understands that it's not just about my son's heart, but about his whole life.

Which today, includes being discharged in time to make big sister's first softball game.

Praise God for a medical team who understood that...and Bodie's body who cooperated fully with that plan.

Sent from my iPhone

...And we're circling...

Still in a holding pattern over here, circling over that perfect spot where Bodie's EAT goes away and we get discharged. I have no idea when we'll land.

Today was a better day than yesterday. Better in that we had 2 longish stretches without EAT. After being paced out of EAT this morning, he made it 2 1/2 hours before he went back in. We re-started Atenelol (a beta blocker designed to keep his heartrate down) and then paced him out of the EAT again. That time, he made it almost 5 hours. So, I guess on the whole we're seeing progress. Bodie's EP tells me not to be discouraged, that we made a lot of progress today, and that everything he's seen yesterday and today has helped him to understand a little bit more of what Bodie's heart is doing and why - and helped him to plan his next steps.

But I'm not that patient. I want it resolved yesterday. So, I am discouraged. Trying to remain positive - I know things could be oh, so much worse. We're so lucky that Bodie is doing as well as he is, that this isn't a surgical admission, that we're at a center with such a phenomenal EP team. But I'm tired. Bodie's bored. 

Bodie's skin is SO over this.

We're SO.READY to get back to our lives.

Please pray that happens soon.

And please pray for continued bright spots in our somewhat mundane days.

Amazing nurses like Yvette, who has been with us for a long time. Bodie was pretty well convinced Yvette was his personal babysitter today, playing hide and seek with her and bringing her all sorts of presents all day.

Friends who drive up in the middle of the day to play in the play room with us, like Sarah and Randy, from our home group at church.

And beloved teachers like Miss Chelsea, who come all the way up here after a hard day of work to play with Bodie.

Please pray for continued forward improvement tomorrow, and for Bodie's body to do what we need it to.

Our new guardian angel

In the midst of everything going on with Bodie this week, I haven't mentioned that we lost someone very close to us.

Dusk's grandma passed away on Monday. Although she lived in Oklahoma at her passing, she had lived in California for years before that. Dusk lived with her during his college years, and we had visited her with the kids several times before she moved.

We're so grateful our children had the opportunity to get to know and spend time with Grandma Vickery. She was a wonderful woman and very, very loved.

We love you, Grandma Vickery. We know you're holding Grandpa's hand and celebrating with Jesus now. Thank you for  watching over our sweet Bodie.

Holding patterns.

I detest holding patterns. I just don't got time for that. In the air or on the ground, they just slow.me.down. And I can't stand them. 

I especially don't like them when they're referring to my spunky 4-year old boy.

But, that's where we find ourselves.

Last night and today didn't go exactly as hoped for. Bodie's Electrophysiologist was in our room 3 different times today, interrogating his pacemaker, reviewing the ekg print-outs and checking his rhythm. All told, his pacemaker was interrogated fully twice, and partially interrogated (to confirm rhythm) multiple other times, and he had 2 ekgs. It's all very very complicated (his EP said it's "EP 404" - you know, 4 levels above "EP 101"?), even for the gurus in this field. Bodie is just interesting (his EP's word - probably only because it's rude to call someone else's kid weird). But he definitely kept us on our toes today. In the picture above, he had a total of 19 stickers on (5 for his regular monitoring, 12 for the ekg and 2 for the pacemaker interrogation). We didn't want to take any off, since we knew they'd be continuing the monitoring throughout the day. 

Anyway, the long and short of it is that he's in EAT all the time. It's likely a different focus than before, but it's there and the Flecanaide isn't making it go away. Yet. But the Flecanaide is definitely having an effect. Unlike his previous EAT, he can be (and successfully was, twice today) paced out of this EAT. But, unfortunately, once he's out, he's bouncing right back into it within about 10 minutes or so. Talk about discouraging. I may have actually uttered the words "Rhythm issues suck monkey balls." Sorry folks, but they do. For reals.

The question is whether (1) the Flecanaide just isn't enough into his system yet to keep him out of the EAT, (2) the Flecanaide dose isn't high enough for him, or (3) the Flecanaide isn't the right drug for him.  We just aren't far enough into the Flecanaide to know the answer to any of those questions. So, we find ourselves in a holding pattern. My favorite place, right? 

Sigh. God is clearly teaching me patience again. 

So we wait. And we try to pace him out of the EAT again tomorrow morning (2 more Flecanaide doses in from this morning when we tried) and we see whether he can stay out of it. And we go from there. 

I hate waiting. Have I mentioned that?

But that's where we're at.

So, keep the prayers coming.

In the meantime, we'll keep hanging with our favorite peeps.

Nutritionist Emily 

Emily has been with us since birth and is pretty much the only reason the kid gained enough weight to avoid a g-tube. We so heart Emily!

and Nurse Michelle 

Today was Michelle's last day on CVAcute - she transitions tomorrow to the Emergency Department. We're SO sad. We have a long history with Michelle and absolutely adore her. She is always such a radiant happy face to greet us in CV Acute. What a tremendous loss to cardiology - but how lucky the ED is to get her! We're secretly (or maybe not so secretly?) hoping we don't see her again (in the hospital at least!)

and doing lots of games and crafting

(yeah, we might be getting a little stir crazy in these parts.)

Bodie has been charming the pants off of everyone in the unit. He has literally been sprinting down the halls - to get to the play room, the nurse's station (where he's probably stolen at least 50 stickers by now), etc. I have to say, his spunk is pretty awesome, especially for a cardiac kid.

Keep the prayers coming, for our rare little man - pray for clarity, answers and a solution!

Watching and waiting...

So, we're here in the hospital, 36 hours and 3 doses of Flecanaide in. The good news is that he has had no negative reaction to speak of, thankfully! The neither-good-nor-bad-but-just-is news is that he also hasn't had a positive reaction. His Electrophysiologist tells us patients never react to the first or second dose. They "should" react to the 4th dose, but in his experience, most patients who are going to have a positive reaction to the Flecanaide, do so about an hour after the 3rd dose. So our money - and your prayers - need to be on tonight (he just had his 3rd dose) and tomorrow morning, when we get our 4th dose.

Please keep the prayers coming that this drug works for Bodie!

Besides that, we're hanging in there, staying VERY busy.

Minutes after getting to the floor. Just chillaxing, watching a movie, eating chicken nuggets.

He walked into the Acute Care Unit laughing and playing and has been pretty happy ever since. He is entertaining the nurses nonstop. ;-) 

We've been working on our letters

(Schoolwork doesn't stop just because we're in the hospital!)

and making "telescopes"... 

We've been "hiding" from the nurses

We've continued to feed our obsession with the vacuum tube system here, by playing on the kindness of nurses and sending things from one nurses' station to another.

 

And having some special time with some VERY special friends.

My fellow heart mommy, Dana, stopped by today and brought us lunch. Dana's sweet daughter Addie has ALCAPA (another CHD) and was in the CTICU for a long time with Bodie when he was a baby. Dana and I grew very close. Addie is doing incredibly well now, thankfully! Dana and I correspond on email often, but I think it's been a couple of years since I have seen her in person. Today was AMAZING - so much fun to sit with her!

We snapped a picture of the 3 of us before she headed into the CTICU to see favorite nurses and doctors. I LOVE this picture, especially since I'm fairly positive I have a picture somewhere of Dana with Addie and me with Bodie right before we were discharged when he was 5 months old. We've come so far.

While having a close friend of mine visit was a huge treat for me, Bodie got his own special treat - in the form of his BFF Ella, who was here for her pre-Fontan cath (which went great, by the way!). And, luckily for me, Ella's parents, Melissa & Brady, happen to be two of my favorite people on the planet - so, it was sort of a party, even in the hospital! We're so blessed to have been here the same time as them!

We got settled into our room while they were still in recovery. But Bodie was chomping at the bit to see Ella, so as soon as we got word that they were settled in, Bodie practically sprinted down the hallway to see her. This is what transpired when they saw each other.

Ella's expression just gets me. You can totally sense the love between these two. 

 And, once Ella was feeling better, we did a few trips back and forth between their rooms for the kiddos to play. They are SO.STINKING.CUTE together!

Ella went home today, and Bodie just ran to her room tonight, just to make sure she wasn't still there. Poor little dude. We'll definitely have to plan an out-of-the-hospital date for them in the near future!

I'd also like to send a shout-out to Dusk's amazing Aunt Karen, who came to town to help out with Sierra this week (and, from what I hear from Dusk, to help with a whole bunch of other stuff as well). Thank you SO MUCH Aunt Karen - what a blessing to know our sweet girl is taken care of! 

 That's it for now. Please keep those prayers coming for our sweet boy!

Tuning up this broken heart

This little dude is SO excited. He's been asking all week whether it was the day he gets to go to the hospital. 

Me? Not so much.

Sigh.

We're headed into the hospital tomorrow for Bodie's med change admission. We'll be transitioning him from Amiodarone to Flecanaide. Both are designed to treat arrhythmia like Bodie has. Both have their own set of serious side-efffects, although Flecanaide significantly less numerous. Luckily, Bodie has never shown any of the side-effects of Amidarone (which can negatively impact the lungs, thyroid, skin and liver, just to get started). We are so hopeful the same will hold true for the Flecanaide. 

But the stakes are higher than we'd like. 

It could work. As in, really, truly, stop the EAT. Immediately. As in, in and out of the hospital in 3 days. And, in doing so, it could really improve his sats. As in, enough that no further intervention is needed. Please pray this is our scenario. 

It could work and stop his EAT, but not actually increase his sats enough to avoid further intervention. If this happens, we'll be headed into a cardiac catheterization in April or May to hopefully close his fenestration. This, while not our best case scenario, would be ok, since we'd at least know what role the EAT plays vs. his fenestration in keeping his sats low. 

It could work, but take some time to get his levels where we want. This could mean a prolonged hospital stay. 

It could not work at all, and leave us where we're at now - with a med with potential serious side effects which doesn't stop his EAT. If this happens, then we'll have to discuss another med. The list of potential meds is a short one, and they all have nasty side effects. That's just where we're at - choosing between the lesser of 2 evils.

He could have a serious cardiac reaction to the Flecanaide. As in a lethal arrhythmia. As in cardiac arrest. We'll be in the hospital and they're equipped to deal with it, but even so, it's a freaking horrible situation!  The odds aren't great, but they are there. It is a known risk to this drug, but occurs very infrequently. This gives us hope. But we're still nervous. When you get right down to it, the odds don't matter if you fall on the losing side of them.

We're nervous. We don't know how Bodie's body will react to the medication. We don't know what scenario we'll fall into. We're praying like mad we fall into the best case scenario. But...this is Bodie. A kid who tends not to tread in "best case scenario" territory. I'm not sure he'd recognize it if he landed right in it. 

We're asking a lot this time around. But the upside is just so stinking high that we have to.

So...please 

* PRAY FOR BODIE.

Pray that his body responds really well to the medication, that he has no adverse reaction. that the EAT stops immediately, that his heart maintains a sinus rhythm, and that his sats come up. Pray that we are in and out and back to living life, but with a pinker boy.

* PRAY FOR SIERRA.

Our sweet girl. Pray for peace for her little heart. When I asked her tonight how she was feeling, she said she was sad and scared, that she is worried Bodie's going to get hurt in the hospital, that he should just be at home playing with her. 

It's a lot for an almost 7-year old. 

Pray for her spirit.

* PRAY FOR DUSK & I.

This isn't easy. No matter how blase I am about just a med change admission, there is always a part of me that hesitates, that remembers what I've seen, that dwells for a second too long on the possible negative outcomes. Pray for peace for Dusk and I, that we remember that our son is on loan from our Father, that He holds Bodie's tiny heart and fragile body in his hands.

Pray for us. Please. Just pray.

And...while you're on your knees, pray for Bodie's bff and future wife, Ella. She's going in for her pre-Fontan cath tomorrow, also at CHLA. Their admissions were originally scheduled for the same day in February, but both got rescheduled to tomorrow. I love when God provides like that.

Bodie and his Ella.