Saturday, December 31, 2016

How we define "Inspire"

Since Bodie was diagnosed with heart failure, I have been in such a rough place, emotionally.

Outside of the fear of the unknown, which obviously is a big factor, it was more.

Bodie has always been such an inspiration to other families of children fighting with congenital heart disease. I didn't even realize how much of an inspiration he was until he got sick in November and people started coming out of the woodwork to tell me how much our journey had affected theirs, how much HOPE Bodie had given them as they started their own CHD journeys. 

Bodie has always been a kid who has suffered complications, but has pushed through and had a pretty amazing quality of life in spite of his hardships. He has provided so much hope to newly diagnosed families, who could look at Bodie and say "wow, look at him! You'd never know he was sick  - he looks like a regular kid and lives a regular life. If he can, maybe my child can too!"

But the heart failure changed all of that on a dime.  I kept watching Bodie struggle, thinking "how can we give hope to newly diagnosed families anymore? No newly diagnosed family wants to hear that a 6 year old HLHSer suddenly goes into heart failure and is in and out of the hospital and that his parents are scared out of their minds."

I was really struggling with trying to reconcile this sudden shift for Bodie.

And then an amazing veteran heart mom reminded me that hope is "living with half a heart and waking up to find joy and optimism and be kind another day. That's really all it is. That's hope. It's not about perfect health. It's not about perfect labs or perfect test results or straight A's or being able to play son wakes up every day and chooses joy, optimism and kindness and that, is what hope looks like."

And I realized she was right. 
I am always grateful for this mom and her wisdom (her HLHSer is an adult now, so she has lots of it!). 
But I was especially grateful for her words on that day. 
I needed to hear them.

Things are still scary for us.

We spent all day Wednesday in the ER with Bodie, with what we were afraid was worsening heart failure. It turned out his heart is stable, maybe even improving just a bit (thank God!), and what he had was just a bug. 

He seems to have bounced back and is on the upswing again, thankfully. We are so grateful for that.

We are on a roller coaster, to be sure. 

But, even so, my friend is right. 
There is still so much HOPE and INSPIRATION to be found even in this part of the journey.

Today, on the last day of an unquestionably rough year for our family, we hope newly diagnosed families can look to find HOPE in this.

Our boy is HAPPY.

The day after being in the ER all day, he was touring a space museum with his grandparents and family, running and laughing.
Instead of having grandma and grandpa here because we needed help while he was in the hospital (which we did), for that moment, we got to be a family just going to the museum with grandparents in town for the holidays.  
That night, he hit another regular 6-year old milestone, by losing another tooth!
Yesterday, he was able to take a hike and explore God's beautiful creation.

Because we're so close to this, walking day in and day out in this very scary place, I sometimes forget to take a step back and look at the big picture.

My son has a half a heart.

A half a heart.

And that heart has some serious communication issues with itself.

But, thanks to the the power of prayer and modern medicine, he is still here with us, bringing us more joy than we thought possible.

At the end of the day, this journey is scary and the turns are bumpy and unexpected. 
BUT our son, even so, is happy. 
He wakes up and chooses to embrace life. 
He is funny, he is smart, he is happy. 
He knows Jesus and understands the importance of that relationship.
We are blessed every day by him. 

Big picture here. 
We are so so blessed. 
Fighting to find joy and happiness and gratitude despite the difficulties we face.
That, my friends, is what inspiration looks like.
This 6-year old should inspire you. 
He inspires us.


Friday, December 23, 2016

The gift of generosity

We have now been home a few days and Bodie (from the outside at least) is doing well. Really well. His rhythms are still not improving (which worries me considerably), but he has great energy and is eating better than he has probably in his entire life. We are feeling very blessed, but still very much in need of prayer that all of this somehow is translating to an improvement in his heart function.

I just want to take a moment to thank those of you who have so generously given to our family over the past month. We are overwhelmed by the generosity of our close friends and family, and even complete strangers who have been touched by Bodie's story.

To Becky and Cami, thank you a million times over for coming to our house, picking up all of our Christmas presents, wrapping them with unbelievably sweet extra touches, and dropping them back off. It truly was like having little Christmas elves!!! 

To the countless local Westchester moms and school friends who sent Legos Bodie's way, THANK YOU (another separate post about that coming soon). You helped Bodie feel like a little boy - instead of a kid stuck in a hospital!

To Lucy and Julia, who came to the hospital to sit with me and bring stuff for the kids - and see beyond my "I don't know how to ask for or accept help" to figure out a brilliant way to help our family. Thank you for your compassion and love.

To Yasuko and Brittany, who took Sierra without even questioning it (even when she had a fever and was probably infecting your kids), thank you. And thank you to those who so generously offered to help with Sierra. It means more to me than I can say to know that my sweet girl is being loved on even when I can't be there. 

To Alexander's entire family - getting the opportunity to walk beside a fellow fragile heart warrior and to see him rebound 100,000% from a heart transplant meant more to me than I can say. At a time when we are being asked to think more concretely about transplant, and possibly being thrust into a world we weren't prepared to enter for some time, we so needed that. I needed to see a post- transplant kid fly through recovery and get home at 19 days post transplant, doing far better than he ever did before. I know he was going to do incredible regardless - but thank you for letting me witness his journey. Thank you for letting me into the wonderful side of transplant.

To all of Bodie's classmates and teachers who sent cards, thank you. Bodie's face lit up as he went through the cards - and I shed a few tears. Thank you for being an open, loving community even when it's scary. Especially when it's scary. We are beyond blessed to be a part of your community.

To Shannon and all of the women who showed up to pray with me and over me and share your love for our family on Wednesday night, thank you. I was profoundly touched and strengthened by the time I spent with you all. I am so grateful to have such wonderful Christian women in my life.

To Michelle, who sent a cleaning company out to clean our house when I was too paralyzed by anxiety to do it, thank you. To be able to come home to a clean home after a hospital stay meant so so much.

To everyone who has donated money or gift cards, THANK YOU. That truly is our most tangible need right now. Many of you know I work part time - I do accounting consulting work. I freelance. Which means, if I'm not working, I'm not getting paid. We depend on my income to keep our bills paid. When Bodie is in the hospital, I'm not working. When he has been in heart failure for month prior to that admission and had lots of extra hospital appointments, I am not able to work as much. When he gets out of the hospital 6 days before Christmas, it is hard to fit in extra work hours amidst catching up on life and the holiday business. Combine that with the fact that I was SO on the ball this month that I made sure to pay our home mortgage not one, but TWICE. (Yes, you read that right.) And, because this is Los Angeles, and mortgages are over the top, it was a very costly error to our bank account. Needless to say, Christmas was looking lean. So, to have the outpouring of Target and Grubhub giftcards and checks come in unexpectedly meant more to me than I can say. It truly was God answering my unspoken (but very very deeply felt) prayer. THANK YOU. 

If you would still like to help our family, we do very much need and welcome help. My dear friends Lucy and Julia have articulated some wonderful ways to help here. (If you are unable to access it, please just let us know and we'll repost it.)

To all of you who have prayed constantly for our boy and our family. We know this is why he is here, running around full of energy. THANK YOU. God hears our prayers. Please, please, please keep praying.

Monday, December 19, 2016

Our Christmas Miracle

Bodie was discharged this evening! What a beautiful early Christmas gift! 

We didn't tell Sierra Bodie was getting discharged until she showed up at the hospital and saw us standing out front. She jumped out of the car and ran to him and he flew into her arms. There was a group of women standing behind us and they all started crying. It really was perfect.

Truthfully, we hesitate to use the word miracle, because we don't know yet what all this means. Bodie's labs this morning showed a significantly improved BNP (measure of heart failure). To put it in perspective, the week before his cath, it was over 900 - and this morning, it was 369!!! We still want it to continue to lower, but this was a significant movement in the right direction. However, his echo doesn't show much improvement. We are very, very hopeful that we will see improvement as time goes by, but we do not have a guarantee on that. 

Bodie looks good, the be sure. Actually, he looks fantastic. The most energy and highest oxygen saturations we have seen since before he went into heart failure. He has been squealing and chattering nonstop with Sierra in the backseat as we drive home. Clearly, the changes we made this week have been good for his body. But whether those changes will help us avoid transplant for now is anyone's guess. We covet your prayers for his function to continue to improve.

He continues to have a higher heart rate than we would like, but because he is stable and otherwise looks so good, the team felt it was safe to manage the rhythm issues on an outpatient basis. Please pray that, as his heart heals, his rhythm issues will lessen as well.

Tonight, as we find ourselves 5 days from Christmas, we are overwhelmed with gratitude to have our little family back together and home. We are so grateful to celebrate our Savior's birth together. 

We don't know if our son is getting the Christmas "miracle" we prayed specifically for, but he did indeed see miracles happen this week. He had a cardiac catheterization that showed his Fontan conduit to be working well. He had a single solitary seizure that left behind no neurological deficits and instead lit a clear path for us going forward.  And he sits with us now, looking better than he has in over a month. However, you define "miracle," we have indeed witnessed them this week.

We thank you for your love and support during an extrordinarily difficult week. Please continue to pray for Bodie and our family as we enter this new season of uncertainty, watching and waiting to see whether his heart function will rebound. 

Uncertainty is not easy for anyone, and we are so grateful during this Advent season for the constant reminders of the certainty our Savior provides. 

Merry Christmas from the Bennetts. 

Sunday, December 18, 2016

The Honest Truth

This is about to get real here.
Super honest.

But first - Bodie is doing better-ish. Symptom wise, his nausea is coming and going, but he hasn't thrown up since yesterday morning. His energy is better. Both great things. But we're not making much progress on the rhythm end. A little. But really his heartrate is continuing to stay significantly higher than we want (in EAT), and we seem to be caught between a rock and a hard place - he needs beta blockers to bring his rate down, but beta blockers are causing heart failure and hypoglycemia. We should know more about what the next steps are when the electrophsysiologist comes in tomorrow. Please continue to pray for him (Bodie, not the electrophysiologist - although I suppose he could use your prayers as well, as he attempts to figure out the conundrum that is Bodie).

Ok, now for the honest part.

This journey of life with a medically fragile child is HARD.
After I wrote that last blogpost, I was done. 
More than done. 
I was tired of being here, worried sick for my poor boy and missing my sweet girl.
I am usually pretty good at staying strong and positive. It's sort of my "role" in our family and one I relish and wear well.
But on Friday, I finally cracked.

My friends who I was texting because I couldn't trust myself to talk without crying (and didn't want to cry when Bodie was awake) could see it.
Dusk could see it. 
I'm pretty sure anyone within 10 feet of me could see it. 
I guarantee you the nurses who saw me lying in bed with Bodie all Friday afternoon and crying everytime he fell asleep could see it. 
Friday was just an all around rough day.

I needed a break, to get away, to regroup, to see my girl, and to get myself in a better space to stay positive for my sweet boy. (And, the severely herniated disc in my back really needed me to get in a better space if I wanted to continue to be able to walk after sleeping on a hospital couch for a week.)

So, Dusk came up Saturday and spent the night and the better part of today with Bodie. 
I was able to get away, and spend some much needed time with Sierra. 
It worked out really well.

We had BIG plans, of going out to dinner and getting lots of snuggle time in. 
In reality, we were both too tired to do much of anything but Taco Bell. 
And we did eventually get the snuggle time in, but first we got in a run to urgent care, because my sweet girl has a raging case of tonsillitis. And then we got in a run to CVS to wait for a prescription to be filled. And then we finally got home and got the first dose of meds in her - only to have her throwing up an hour later. 

So, if you're counting, I managed to deal with both kids' vomiting in a 12 hour period - and dad missed them both! I call it the "power of dad." It's a thing.

But I digress. Being home was rejuvenating and I was so glad to be there for my girl when she was sick. Because, at the end of the day, when you're sick, isn't mommy who you always want?

Sierra is doing better now that the antibiotics are onboard. But this morning, she broke down when I wouldn't buy her a water bottle at Target (in my defense, she didn't realize she wanted it until AFTER we had already checked out and the person working behind the counter at the "We're too healthy to continue to offer the really yummy Pizza Hut pizza anymore so now we offer some healthy crap you'd never actually eat" place was taking for-freaking-ever.). 

I knew it wasn't about the water. 
She's a good kid.
But, like me, she is DONE.
She's DONE with her family being separated.
She's DONE with being scared her brother's not coming home (I know it's only been a week that he's been in the hospital, but a lot longer we've been dealing with the heart failure issue).
She's DONE with being jealous at all the attention he's getting and then feeling immediately guilty for feeling jealous.

She's 9 years old, guys.

This is stuff that's hard for us adults to wrap our minds around.

Unlike me, she doesn't have a bunch of heart mom friends she can vent to.  So she sat in my lap and she vented to me. And she cried and said she couldn't be brave and strong anymore. And we talked about how hard it is to be brave and strong. And about how we don't know what God is doing here, but that He is doing SOMETHING. And that it's our job to let His light shine through our lives. That it's ok to be afraid and it's ok to be angry and it's ok to be frustrated.  But that the Bible has so so so many verses telling us not to worry. And how maybe someday God is going to use her to minister to other heart siblings, just like he has used mommy to minister to other heart parents. And we prayed. 

And I realized that me coming home wasn't just about me, but it was about her and that moment. Because that moment so needed to happen. And I was so grateful God had orchestrated that moment in that busy Target parking lot.

And these moments - where the kids were able to see each other. 
(Yesterday, when Dusk and Sierra came to the hospital and Bodie and I saw them from his window. You can see them standing on the street below. It was a total day-maker moment for Bodie.)
(And this afternoon, when Sierra and I returned and Dusk and Bodie saw us (you can see their heads in the window between the trees on the second floor).)

They miss each other so much and were over the moon to be able to see one another.

I had two amazing heart mom friends stop by the hospital this afternoon, and sit with me a bit and love on me and give me sweet gifts for the kids and me. I was totally humbled and overjoyed by their presence. 
So, tonight, my spirit is replenished and I'm think I'm ready for the week ahead and whatever it may bring. 
I hope.

So tonight, please continue praying for our family. Pray for Bodie, for healing, for his heart rhythms to get under control so that we can GO HOME. Pray for Dusk and I, for continued strength and positive energy. And pray for Sierra, for her to continue to rebound physically, and for peace and security amidst a pretty tumultuous time. 

Friday, December 16, 2016

Sick little dude

It's hard to believe that blogpost was written just a few hours ago.
Things look pretty different now.
Bodie is sick.

We don't know exactly what is going on, but what we thought was just a response to erratic heart rates appears to be more. He's thrown up 3 times today, has a lot of nasal congestion and feels awful. He doesn't want to eat or drink anything, and he's now on IV fluids to help him stay hydrated. Hemodynamically, he is stable (his oxygen saturations and blood pressures are all good and he is well perfused) and that is good news. But whatever is going on with him is making him feel really rough. 
He just wants to sleep (he didn't get much sleep last night on account of the erratic heart rates keeping him up) and keeps saying he feels awful. 

His heartrates are less erratic now, but he is still in a constant state of EAT, and will be until the medication gets to the right level for him. It is hard to know whether his heart, in its current state, simply cannot tolerate the high rates it could before and that is causing his nausea - or whether this is all just a bug. Or perhaps some combo of the two. We would prefer this to be all bug related - because it's pretty scary to think of his heart being suddenly unable to handle rates it has been in off and on for years.

At the moment, it is hard not to feel like home, which previously felt so close, was snatched from our grasp today. For the last 3 days, home has been waved in front of us as likely happening "tomorrow." But when the heart failure doc left today, he actually said "Well, I'm not back in until Monday, but odds are, you'll still be here then. But hey, as long as he's getting better, that's the important thing,"

I know he is right. 
I know how long Bodie stays in the hospital isn't important, but that he makes it home eventually and feels better is the important thing. 
I know we are so so lucky that Bodie is doing as well as he is in spite of everything that happened this week.
I know this all to be true.

But I will be honest. 
It's so so hard being in the hospital with a 6 year old right before the holidays. 

I see his friends having Christmas parties and gift exchanges and I want that for him. I want him to be able to just be a kid excitedly anticipating Christmas, not be a kid stuck in the hospital with a half a heart that's very sick, weird arrhythmias and a virus on top of it.

And I want him to be able to see his sister. As a side note, any children's hospital that claims to provide "family centered care" has no business having a visitation policy that prohibits siblings from visiting during the cold and flu season. I can say with absolute certainty that this situation is made 100 times harder by that policy.

Please just pray.
Pray that we get his arrhythmia under control (ideally with tonight's dose of the medication!!!)
Pray that his RV panel shows a bug with a short life, that it passes quickly.
Pray that he feels MUCH MUCH better tomorrow. (We would love another Christmas miracle and have him be feeling 100% better by tomorrow!) 
Pray that his heart continues to recover.
Pray that we are home together as a family soon. 

Big Picture: GOOD.

The last few days have been such a roller coaster.

The good has been good. Very very good. As in, major answers to big picture prayers good.

1. His BNP (measure of heart failure) has dropped by a LOT! 2 weeks ago, his BNP was 762 (for single ventricles, you really want to be under 300, but most importantly, you want it not to be trending upwards over time). Last week, it was over 900. Yesterday morning, it was 495!!! This is an unbelievable answer to prayer and a very good indication that the changes we made this week made a difference.

2. His function looked BETTER on echo yesterday! Not a lot, not even by much, but it did look a little bit better - and definitely did not look worse! We did not expect to see an improvement so quickly, so this was an absolute answer to prayer. Time will tell whether we will see further improvement, but we are definitely hopeful at this point.

These are both more than GOOD. They are fantastic and are answers to prayer.

3. We also had a few special visits.
He got to love on a hospital therapy dog.
Our Pastor and the former Principal of the kids' school stopped by. It was so lovely for Bodie to get to spend some time with these guys and they totally lifted Bodie's spirits.
And my parents swung through on their way through town - it was so fun to get to see them for a bit!
We also had a quick fly by visit from one of Bodie's Camp Taylor friends, Dante, who was here for pre-op for surgery with Dr. Starnes. I didn't get a picture - Bodie was in isolation and we didn't want Dante taking whatever virus Bodie had into the OR with him. So Bodie waved from his bed. ;-) 

Thank you to all of who you have offered to visit. Unfortunately, because it's cold and flu season, CHLA will only allow 4 visitors for the duration of our admission. We have to give them the list of those 4 people and no one else is allowed to come. As you can see from the above pictures, we've already hit that limit. 

(Really, this should just be called the "inconvenient" because it's not so much bad as annoying and frustrating and delaying our discharge.)

Things were looking so good that we were on track for discharge yesterday. We were so excited, as it meant Bodie would be out in time for his classroom Christmas party this morning and his karate belt test tonight. But yesterday afternoon, he started having all sorts of arythmias and not feeling well. The arythmias are not dangerous, per se - but they sure as heck don't make his body feel well. And they mean he needs to be back on Flecanide, his anti-arythmic drug that we stopped on Tuesday. So we added it back yesterday afternoon. But it hasn't fully gotten into his system yet.

So, we remain here under observation until his levels get to where they can protect him appropriately. We had thought we'd be discharged today, but they just decided to go up on his Flecanide, so we'll be here at least another night.

So yes, that's 2 days in a row we were geared up for discharge only to find out it wasn't happening. That's a bit rough on a 6-year old. Heck, it's rough on his 40 year old mom. 
We miss our beds. 
We miss Dusk and Sierra. CHLA does not allow any children, including siblings, to visit during cold and flu season - so Sierra hasn't been up here to visit at all. 
We miss being able to be out in the hustle and bustle of the holidays. 
So many reasons we want to be home. And I know we will get there in good time. 
But in the meantime, Bodie doesn't feel well. He threw up this morning. I think it's because his heartrate is really erratic (as in 80bpm one minute and 155bpm the next - that's enough to make anyone sick). It's getting into a tighter range now as the Flecanide is starting to get into his system, but we still need more improvement for it to translate to Bodie really feeling better.

Today, we covet your prayers for the following:
1. Please pray that the Flecanide works quickly, so that his heartrate comes down to a range that is acceptable for him to come home on - and that it makes him FEEL BETTER.

2. Please pray that his heart function continues to improve. Whether his heart function will rebound is still VERY much an open question and probably the thing we need prayers for the most going forward.

3. Please pray for our spirits to improve. We're tired of being here. Our initial plan had been for Dusk and I to switch on Wednesday night, so I only brought clothes for 2 days, thinking I would switch clothes out when I went home. Since I am the parent more knowledgeable about Bodie's rhythms and we're unexpectedly battling new rythym issues, we thought it made more sense for me to stay here bedside instead. But that means I haven't been home since Monday and that Bodie and I are recycling clothes at this point. We have built every Lego set we brought (and an additional one I bought yesterday).
It's getting old. 
Like I said, BIG PICTURE is GOOD. Bodie is improving on all fronts. So remaining here is just an inconvenience. But sometimes inconveniences do a lot to dampen spirits. 
Please pray for some rebounding of spirits over here.

Wednesday, December 14, 2016

Frustration is the name of the game

It's hard being a six year old in the hospital.
It's even harder when, in the last 48 hours, you've had an invasive procedure, a seizure, are in heart failure, have low blood sugar and have a respiratory infection of some sort. Oh, and then there's the whole half a heart business to begin with. 

Yesterday, as the nurse was removing his ART line (and before they took his foot iv out and added a new peripheral iv in his arm), Bodie said to me "Mommy, everything hurts."

I know how you feel, bud. When you hurt, mommy hurts, too. And when everything on you hurts, every single bit of mommy hurts, too.

Big picture, he's doing well. He's recovering well and holding his own rhythm nicely, particularly considering he's no longer on beta blockers. He is responding well to aspirin as a blood thinner, so we are able to table the Coumadin discussion unless or until his heart function gets worse. We got moved to step down at 6:30am this morning. And just got approved for 4 hour pulse ox checks instead of continuous, which gives him a lot more mobility (one less cord attached to him).
All good things and definite answers to prayer.

But he's tired. And he's bored. And he's easily frustrated on a good day. And since the last two days haven't exactly been "good" by a 6-year old's definition, you can guess how low his frustration tolerance is at the moment. It seems we keep starting and stopping projects, with him crying "I give up!" shortly after starting. 

He did perk up when Daddy showed up yesterday - they played Minion rush and ate some serious chow mein together (thank God for Panda Express!).
And he slept GREAT last night, with no dips in blood sugar and high sats. His color is so much better already. 

So now we're where the rubber meets the road from a prayer perspective.

We need Bodie to keep feeling better. 
We need him to be able to keep maintaining a good rhythm and good sugar levels.
Most importantly, we NEED the med changes to help his heart recover.

There is no guarantee his heart WILL recover. And if it does, we have no idea how long before we will start to see any improvements in either echo or maintaining his baseline sugars. It may be a very slow process to getting back to whatever his new baseline will be. There is so much we don't know. These med changes are sort of our last hail mary in terms of possible reversible heart failure explanations. After this, it's sort of we're stuck with what we're stuck with in terms of his heart failure and needing to list for transplant.

So we need prayers.
Very directed prayers.

1. Pray for Bodie's emotional health (and mine, by extension - his whining isn't exactly music to my ears).

2. His last dose of beta blocker was yesterday morning. It has a relatively short half life and has now been out of his system long enough to know he can do well without it. Huge answer to prayer if in fact the beta blocker was what precipitated everything we've seen. Please pray this continues.

3. His last dose of Flecanide (his anti-arythmic med) was yesterday morning. It takes about 48 hours to get out of his system. Please pray he has no arythmias as he comes off of it and that he tolerates being off of it well.

4. He is maintaining his sugar levels pretty well. Please pray that this continues.

5. BIGGEST REQUEST. Please pray that these medication changes WILL return his heart function back to baseline. We don't know if this will happen, but this is the Christmas miracle that we need.  For it to happen, would absolutely be a miracle. We need to stun everyone with the power of prayer and see his heart function completely bounce back. Please please please pray for this. 

We will have to be in the hospital at least a few more days to monitor his reaction to the med changes, but don't know much beyond that at this point. Please pray he responds well and we can go home SOON!

Monday, December 12, 2016

Well, that was unexpected

So today was not our favorite day.
Not even close.
I don't know if it was the worst, but it probably lands somewhere near the top of the list of worst days. Top 5 at least.

But today also showed the incredible power of collective prayer. 
Our boy has inspired so many, and for that, we are profoundly humbled and grateful.

The cath results were clear - although Bodie's Fontan looks good (which is an answer to prayer in and of itself) and his pressures are ok (14-15 for my heart mom friends), his function is very, very poor. It really is global function declining. It explains so many of his symptoms.

After his cath, he was brought back to the PACU. When we got there, he was very cyanotic (super purple lips) and just looked pretty rough. About 30 minutes after we got there, he had a seizure. It came from out of nowhere and was a full body clonic seizure. Bodie does not have "a history" of seizures. He has had 1 seizure in his life, and it was after his last surgery in August, and we chalked it up to the combination of meds he was on.

This one lasted for 2 minutes - they gave him Ativan and the seizure stopped almost immediately once the Ativan was in his system.

After the seizure, the first thing they did was check his sugar levels. 

The first check was "too low to read."
They pushed sugar and checked again.
It was 16.
Yes you read that right.
Now, I don't know much about blood sugar, but I sure as hell know it's not supposed to be that low. And levels that low can and absolutely do cause seizures. 
So we began an endless pushing of sugars to get his levels stabilized. 

So we had our likely cause.
But it would be hours of agonizingly watching and waiting for him to wake up to make sure there were no neural deficits - and watching them continue to push sugars and him struggling to maintain them at an acceptable level.

This whole thing bought us a ticket to the CTICU, and that's where'll be for at least a few days.

Almost 9 hours later, he's almost back to baseline. He's still a little groggy, but is very clear on what he wants to eat and do. He actually said to me "Give me the Ipad - after all, I am the one in the hospital!" So, he's there. He's all there. THANK GOD. Just working through the post-seizure kinks and letting his brain rest a little more as his nervous system comes completely back on line.

The true silver lining in all of this is that his seizure may have given us the insight into what's going on with him. It's complicated, but it boils down to a theory that the combination of Beta Blocker and his recent surgery is not allowing calcium to get into his cells at the rate it needs to - both affecting heart contractibility (the issue we're seeing with his heart function) AND insulin levels in the body. I had been seeing mild symptoms of hypoglycemia since the heart failure started, but had chalked them up to his body just working so hard. 

So we have a plan going forward:
1. We are stopping his beta blockers. 
2. We are adding a vitamin with the hopes of helping his mitochondrial cells feel better (they apparently are super pissed that they're not getting enough calcium and that's likely what's manifesting as low blood sugar).
3. We are adding Tadalafil to help with his slightly elevated Fontan pressures. They're not elevated much, but with as bad as his heart function is, it needs all the help it can get.

What does all this mean? 
We honestly don't know. 
These combined changes may see an improvement in his heart function, but the expectation is not that he will return to baseline. The heart failure doc said if he sees a 5% improvement, the critical 5% that helps Bodie feel better, then he will be happy. 
They may not make any difference - the theory of what is going on could be totally wrong. 
But right now, this is our best guess and our best hope for moving forward. 

Friends, we know that prayer is a mighty force. We know that God answers prayers. And we know that hundreds of you are praying ferverently for our boy. Your prayers are why he is here tonight, wiped out and in an ICU bed, but still here and as feisty as ever. 

Tonight, we covet your prayers for the following:
1. Please pray that the theory we are working off is the correct one.
2. Please pray that Bodie is able to maintain his blood sugars where they need to be - and that the new vitamin will help him get his levels even higher.
3. Please pray for a miraculous full recovery of Bodie's heart - pray that stopping the beta blocker and adding the new vitamin will be exactly the right cocktail that his heart needs not just to recover a little bit, but A LOT. Please boldly pray for a complete return of function.
4. Please pray for Dusk and I. Seeing your child have a seizure is one of the most frightening experiences. It is absolutely terrifying - and I am certain we just added to our therapy bills by the thousandfold today. Please pray for peace for both of our hearts.
5. Please pray for Sierra. She was very worried after Bodie's seizure in August, and I'm certain she will be worried after this one, too.

THANK YOU for your continued prayers for Bodie - they are working and we need you to continue them. Today while Bodie was in the cath lab, I created this map for him of where everyone was praying for him from. You can see it here  If you don't see your city represented on here, please comment and we'll add you! 


Bodie is out of the cath lab and recovering in the PACU. We don't have a lot of answers yet, other than that his function is very poor but it's not clear what caused the sudden decline, which makes it hard to know the path forward. What is clear is that Bodie is very complicated with a lot of moving parts that will require some brilliant minds working on his case. please pray for wisdom for the doctors and for Dusk and I.

Cath is underway

We just left Bodie in the cath lab. Bodie has refused oral Versed (the "happy medicine" that allows them to go back for procedures easily and happily) for his last few procedures. He usually requests iv Versed instead. But this morning was rough (heart failure and hunger do NOT mix well for Bodie and he felt awful this morning) and he was fighting the iv as the anesthesiologist walked up.

The anesthesiologist offered to let me walk him back to the cath lab and him just do the anesthesia via mask, with a ketamine shot as a backup. Bodie chose that.

Except that he didn't want the mask when it came time for it, so chose Ketamine instead, but then was very ticked when he realized the Ketamine was only to relax him enough so he wouldn't fight the mask, and not a substitute for the mask. I will say, it was comforting to be reminded of how smart and brave my 6 year old is, as he was indignantly saying "but I chose the pokey!!!" to the anesthesiologist who was trying to put the mask on him after the Ketamine. Bodie is one smart cookie.

All to say, pre op was eventful and traumatic as always, but he is back now and we will hopefully have answers soon.

Please pray for his heart, his mind and his body. Pray for GOOD answers and send a clear path forward. And pray for Dusk and and I, because I will tell you, it doesn't matter how many times you do this, it just doesn't get any easier.

Friday, December 9, 2016

A plan to shed some light

Prayer warriors, it's time to suit up.
Bodie will be going in for a cardiac catheterization on Monday morning. 
Our call time is 5:15am, so it will be EARLY. 
He is first case. 
This cath will hopefully tell us what is going on with Bodie and what our path ahead is. 
To say we are overwhelmed and concerned is an overstatement. 
We covet your prayers.

We know he will be admitted for at least one night for observation, and possibly longer. There is a high likelihood that we will be starting Coumadin, a blood thinner. 
For my heart mom friends gasping because they know how much I loathe Coumadin, we may finally have to do it. Bodie's right ventricle has lots of crevices in it - not at all atypical of a right ventricle, and something all HLHSers have. When his heart function is good, it's not a problem - blood is moving so quickly it doesn't have time to settle into those crevices. However, right now, the bottom part of Bodie's heart is very stiff and not moving much at all, which means there is a much greater likelihood that the blood can sit, pool and form little clots. Not good. 
We will likely know more after the cath when they get a better look at that part of his heart. But the discussion is definitely on the table and if we do start him on Coumadin, we will have to remain inpatient until they get his levels where they want them to be. We are hopeful this will only be 3 days or so, but it is not unheard of for it to take longer. Please pray that we make the right decision regarding Coumadin, and that, if we start it, we get his levels where we want them quickly. 

So much to pray for.

A lot hinges on Monday. 

Dusk and I are still reeling and trying to process what exactly happened, why it happened, and what it means for Bodie's future. There have been a lot of tears shed over the past 48 hours, and I'm certain many more to come. But I had a lengthy discussion this afternoon with the doctor who will be performing the catheterization and it helped me put things into perspective a bit and I wanted to share it here.

She is also a heart failure doc, and has managed a lot of transplants, and has been at multiple institutions (including CHOP, which is one of the top institutions for managing pediatric heart defects in the world) so has seen a lot over the years. 

I don't want to misquote her and I'm sure I'm not remembering exactly what she said in the same words she used, but I walked away hearing something like this 
You know, Bodie only has half a heart to begin with, and it's declining in function. He is pacemaker dependent and has all these ahrythmias. Frankly, he is lucky his heart has made it this far. Yes, we will see if we can get his function to recover. But even if it does, I want you to really think differently about transplant. Because, our goal is NOT to get a limping Fontan to adulthood. Our goal is to get a GOOD Fontan to adulthood, who can chase his kids around. And if his Fontan isn't going to get him there, then we need to think about transplant. Not tomorrow, but it needs to be on the table. I want you to stop thinking about transplant as a dark scary monster chasing you down the street and think of it instead as a wonderful very viable option for Bodie. Yes, you know the risks with transplant and that you're trading one set of problems for another - but in this case, the trade-offs may well be worth it.

And I realized she was right. 
Bodie has never been a "good" Fontan - or a "good" Glenn or Norwood for that matter. He has always struggled. He has always had complications and never had the exercise tolerance even of his single ventricle peers. He is "good enough" and we work our asses off to make sure he lives as full a life as possible in spite of his "good enoughness" - but to say his heart has been good is a stretch. She said it was like that parable of a frog - if you put him straight into boiling water, he'll jump out - but if you put him in cool water and slowly boil it, then he'll stay there. And we're sort of like that frog - the water has slowly been heating up and we haven't noticed. And then the heart failure team walked in and was like "Oh, shit, that water is boiling!" And we're like "Wha??? It's not so bad." Probably an apt analogy of where we're at.

Sorry for the cursing, but in situations like this, it can't be helped. 

This is all to say that I'm trying to reframe what we'll be doing Monday. Don't misunderstand me. We are not rushing to list Bodie for transplant yet. We still think his heart is worth fighting for. But if transplant is the path God is calling us to, then we'll suit up for that as well. 

So Monday we'll be going in and seeing exactly where Bodie's at and what we can do to reduce his pressures and take some workload off of his heart to help him feel better and buy us time to figure out our transplant plan. And get him to a space where he is stable enough so that when it's time to be listed, he can be at home and living his life. Because if we have taught our son nothing it is this - no matter how crappy life may seem, how hard the twists and turns, there is always always JOY to be found.

Wednesday night (hours after our heart failure appointment), Bodie was a wish kid ambassador at the LA Make a Wish annual Gala. And he lived it up. This kid suited up, threw on a smile and forgot about the latest plot twist.
This kid just epitomizes JOY. 
I'm not sure how we got so lucky with that, but I'm so so grateful we did.

Please join him in suiting up and being in heavy prayer for Bodie on Monday. We know that God listens and that he answers prayer. Pray for Bodie's heart, for answers to be found, for there to be NO complications, for a clear path forward. 

And pray for Dusk, Sierra and I - let's just say our processing of all of this leaves a little to be desired. To give you a snapshot, Dusk and I are barely holding it together, I'm constantly on the verge of tears and fairly paralyzed with anxiety so can't get it together to clean the house (i.e. it looks like a bomb went off), Sierra is suddenly a snotty pre-teen who can't be bothered to speak in a civil tone of voice to anyone, and Bodie has to control EVERY.FREAKING.THING. 
So, in other words, its SUPER FUN at our house.  Wanna come visit?
So maybe some prayers we can all get a little more adept at handling the anxiety are in order.  
THANK YOU for your support!  


Wednesday, December 7, 2016

At a loss...

We met with the heart failure team this morning and things did not go at all how we hoped and prayed they would go. Bodie's heart function is poor, his BNP is up even higher than it was 2 weeks ago, and some of his labs are troubling. We do not know why this happened, although there is speculation (including a theory that at some point during or after his last surgery he had a clot or embolism go through his coronary artery and cause scarring which caused damage to an isolated part of his heart) - but it is highly unlikely that his heart function will rebound. 
At this point, it is about managing him to get him to transplant.

To say today was a punch in the gut was an understatement. Although we always knew Bodie's heart wouldn't last his entire life, we did not anticipate having this discussion already, at 6 years old. 

Today the doctor actually said 

"I want to manage your expectations. This heart will not last to adulthood." 

There were tears all around, especially by Bodie, who shut down and told us afterwards through tears that he was sad because the doctor said he was going to die before he grew up. 

We explained that was NOT what she was saying, and that instead she meant the heart he has right now won't make it and that he'll need a new heart. And that NEW heart will let him do everything he wants to do now but can't (like run fast).  He liked that part (a lot!). 

This is so hard, you guys. So hard. We love this boy so much. And he has defied the odds time and time again. And our prayer is that he will so again this time around. But this news is new and hard to process, for all of us. (We haven't even told Sierra yet, but Dusk will after school today.)

They are scheduling us for a cardiac cath as soon as possible, to see exactly what we are dealing with, whether the heart function is worse (or better?) than it looks on echo, to see how his Fontan pressures look, etc.  There is a lot going on, and in order to know how best to treat him, we need to know what we're dealing with. That will also tell us whether we are looking at transplant more urgently or not.

At this point, we need prayer and we need it BIG. Please pray for Bodie's heart function to miraculously improve (since that's what it would take!), and for this cath to happen soon without any complications (this is huge as cathing someone with poor heart function is riskier). Please pray for his body to fight off bugs well, since it's hard for him to battle through viruses with depressed heart function. And pray for peace for all of us. What we thought was a detour appears to be a new destination for us - one we weren't packed or remotely prepared for. 

Friends, we need you to please please pray us through this. Because we're not getting through this without a heck of a lot of prayer fortifying us. 


Sunday, December 4, 2016

The detours we take

We went to cut down our Christmas tree today. 
Yes, I said "cut down." I know we live in Los Angeles, but Dusk and I both grew up in more rural areas and our families cut down their own Christmas trees each year, so I can't lie - a little bit of us died inside each year we took the kids to the Home Depot Christmas Tree Lot. Last year, we introduced them to cutting down their own tree.

We went back to the same place we went last year. Last year, they had tons of beautiful trees in all shapes and sizes. 

But, because we're the Bennetts, and it's 2016, and I think we can all agree that 2016 and the Bennetts REALLY need to just freaking break up already, because it's just not working out for anyone, the trees all pretty much looked like this.

A whole freaking farm of Charlie Brown Trees. 
Apparently the Santa Paula Christmas Tree farm was hit with some sort of disease and lost most of their trees. They're regrowing.

Of course.
Because, 2016 and the Bennetts.
On a side note, we're really sorry to everyone else who wanted to buy there - I'm sure that had the Bennetts planned to get their tree elsewhere, the Santa Paula farm would have been spared the tree disease.

But I digress.

We pulled out the phone and thanks to the modern technology of wifi and yelp, we found another farm 30 miles south of us. So we headed out, following the google map directions...

And stumbled upon this little gem - Grimes Canyon. 
A beautiful little stretch of highway with some rather treacherous turns, and amazing sandstone walls that people have carved various drawings and writings into.
They were SO cool. We stopped off the road and let the kids explore, carving into the walls. 
It was totally not on our agenda, and I couldn't be spontaneous if my life depended on it, but we decided to stop anyway. And it was SUCH a cool detour, and one we'd never have found had we not taken such a circuitous route to finding our Christmas tree this year. 

We did eventually get our tree at a lovelylittle tree farm in Thousand Oaks and it's now proudly adorned with way too many ornaments but so much love. 
Today was such a powerful reminder of how detours can shape our lives, how even in the midst of annoyance and not getting where we thought we were going, if we just open our eyes, we might see some cool surprises.

We're currently on another detour, this one with Bodie's health. I haven't blogged any updates, because, well, we don't really have any. He had a REALLY rough Thanksgiving, with the same symptoms he had shown in early November - he was SO blue and lethargic, spent a lot of time lying on the floor, and would cry every time we asked him to eat, saying he was going to throw up. It seems beyond improbable that he would have caught another bug so soon, so we chalked it up to worsening heart failure. It was so scary. 

But then, he bounced back and Sierra had some GI symptoms as well, so perhaps the improbable really did happen, and it was another bug on top of his heart failure. We don't know.

He seems better. Not 100% back to normal, but better. His energy still comes and goes (although it seems to be mostly on the upswing), and we struggle with making sure he stays on top of eating, which seems to be more critical now that he's in heart failure. Low blood sugar and heart failure just don't combine particularly well for him.

We see the heart failure team at CHLA this week, and we covet your prayers for that appointment. We don't know what route they will want to take - they may want to cath him to find out exactly what's wrong to make the best decisions on what meds to give him. Or they may not want to cath him when he's having function issues, and instead choose to try meds out first and see if we can get an improvement on his echo before cathing. We don't know.

A lot we don't know. 
I deal with uncertainty about as well as I do with spontaneity. 
Not so much. 

So we covet your prayer this week as we meet with CHLA. 
Please pray boldly for Bodie's echo to show improvement, and for wisdom for the heart failure team as we manage the detour ahead. 
Please pray for this detour to be a short one, and that God might show us wonders we might have missed were we not on this detour. 
Pray for Bodie's body and pray for peace for us all in this time of uncertainty. 

Tuesday, November 22, 2016

Choosing Gratitude

We had Bodie's follow-up echo and cardiology appointment today. We did not see the significant improvement on the echo that we were hoping for. We did see a tiny improvement, which we are grateful for. AT LEAST IT DID NOT GET WORSE! We did a bunch of labs (including measuring his BNP, a heart failure marker, and CRP, a cardiac inflammation marker). We will also be getting referred to the heart failure team at CHLA. 

This is very serious, and has the potential to completely upend our lives. It is scary and we covet your prayers over Bodie.

This was not what we are hoping to hear, but even so, there is much to be thankful for, and that is what we're choosing to focus on this Thanksgiving week.

Bodie's significant lethargy and nausea have all but abated, and seem to have been caused by a combination of bugs and not heart failure. Bodie feels fantastic, and for that we are grateful

Bodie's heart failure symptoms are so mild (slightly lower oxygen saturations, purplish tint to his lips and occasional puffiness around his eyes). Heart failure symptoms can be so much worse, but they are not - he is living a full and abundant life, and for that we are grateful. 

He likely has had this degree of heart failure for some time, and we had no idea. Had he not had a combination of nasty bugs that pushed him over the edge, we might not have even known. And it's pretty darn hard to treat something you don't realize needs to be treated. The illnesses brought his heart function decrease to our attention, and for that we are grateful.

One of the theories being floated around is that his anti arrhythmic med, Flecanide, may be causing his heart failure. Because of that, we cut his dose in half last Wednesday. We were worried that his heartrate might skyrocket, or that his EAT would increase. That did not happen. In fact, his EAT seems to have lessened. We have learned a valuable lesson from this wean - his body can get the same benefit from a smaller dose of Flecanide. Bodie can safely get by with a lower dose on a medication known to have very huge very scary potential side effects, and for that we are grateful.

His heart failure is not affecting his entire heart. For the most part, his function is fantastic, other than the apex, which simply isn't moving the way it should be. We don't know what this means. But we do know that we are not dealing with a global decline in function, and for that we are grateful.

His cardiologist does NOT believe (and neither do we) that we are anywhere near heart transplant discussions. However, she thinks he has gotten complicated enough with enough moving parts that we need some fresh eyes, and maybe some medication adjustments to help him out. So she is recommending we see the heart failure team to see what their thoughts are. We have two top notch heart facilities close by with excellent heart failure teams, and for that we are grateful. And we have a doctor who understands when we need some more help, and for that we are profoundly grateful, and do not take for granted.

We have a Father who answers prayer, who knew all of this was coming, and is holding us all in His hands, and for that we are grateful. 

Big picture: our son is here, full of joy, vibrancy and love (with a side of piss and vinegar). 
How could we be anything but grateful???


Friday, November 18, 2016

Stumping us all...

Warning: this is about to get complicated. 
Hold onto your hats, folks.

It's hard to put into words the kind of miraculous turnaround we have seen in Bodie this week. On Monday, he was blue, lethargic and winded. I was getting calls from his school about how concerned they were and we were in talks about cutting his school schedule back to half days until we got this heart failure thing under control. He couldn't even participate in recess because he simply didn't have the energy to do much more than sit. I was anticipating a hospital admission by week's end. I was SO scared. 

But something changed, starting sometime mid-day Tuesday. By Tuesday afternoon, he was feeling so much better, and within another 24 hours or so, his symptoms were completely gone. Other than some remaining cyanosis (purple lips) in the mornings and slight puffiness in his eyes, by all accounts, he is 100% back to himself. He even felt well enough to go bowling tonight!

Honestly, we're all kind of stumped. Clearly, the power of prayer moved God's hand over our son this week, and for that, we are profoundly grateful. Please don't mistake our continued concern for lack of gratitude for what we witnessed this week.

But it is too soon to know whether we are out of the proverbial woods. We might be. Or the past few days may have just been a reprieve to prepare us for the news we will receive next week. We just don't know and are still in a state of concern. In any case, we are so incredibly grateful to have our spunky, vivacious boy back.

We don't know much at this point. What we know is that 
(1) he had depressed heart function on his last echo;
(2) he was displaying classic heart failure symptoms at the time;
(3) those symptoms also are classic stomach bug symptoms; and
(4) his symptoms disappeared very shortly after starting the diuretics and before making any other med changes.
That is literally all that we know. 

There is so much we don't know.
1. Was he in heart failure before this week and we just didn't know it? Did the bug (or, more likely, 2 bugs - a tummy bug and a cold of some sort, as he does have some mild respiratory symptoms as well) just push him over the edge? If this is the case, then we are incredibly grateful for the viruses, as they alerted us to something we would not have known was happening. Now we can aggressively treat it.
did the catching of the 2 bugs just wreak enough havoc on his body to cause depressed heart function? Not likely but not unheard of.

2. Did he have more EAT (fast heartrate) lately because he was in heart failure?
did the increased EAT itself cause the heart failure?

3. Are his symptoms gone because they were caused by a bug and he's over the bug (so his echo next week should show no change)?
are the symptoms gone because they were caused by heart failure and that has miraculously disappeared (so his echo next week would show an improvement)?

4. Did the diuretics provide enough relief to keep the heart failure at bay? Seems unlikely since his symptoms started to abate before the diuretics could really have done much.

As you can see, we have a lot of theories, but no concrete idea whatsoever of what is actually going on. Outwardly, he appears much much better. But with cardiac kids, the outside doesn't always match the inside. His heart failure may be every bit as bad, if not worse, than it was on Monday when we saw his cardiologist. We don't think so, and we hope that's not the case, but he truly have no idea. So I would say we're being "cautiously optimistic" but I honestly don't even think we have enough information to be optimistic at this point. 

We will know more after we do a repeat echo next Tuesday. That should give us a good idea of where we stand and what path to take going forward. In the meantime, please keep the prayers coming for our sweet boy. His recovery this week has been nothing short of miraculous. Your prayers are clearly being heard. Please keep them coming. 

Monday, November 14, 2016

I didn't want to be right...

I didn't want to be right.
I really didn't.
But, as it turns out, symptoms of tummy bugs don't just mirror heart failure...sometimes they actually ARE heart failure.

We saw Bodie's cardiologist this morning and an echo confirmed my worries. His symptoms aren't being caused by a bug. They're being caused by a decrease in his heart function. For my heart mom friends, his apex isn't contracting like it should be. For my non heart mom friends, his heart isn't in the worst shape it could be, but it's definitely not where we need it to be to keep up with him.

We dealt with this in September, and chalked it up to post-op issues. We never expected to be dealing with it again 2 months later.

Bodie is such a complex little dude. 
There are several theories for what is causing it. 

It could be that his persistent EAT (the fast heart rate we tried to make go away by surgery this past summer) that is still hanging around has morphed into a different kind of rhythm that his body isn't sure how to handle.

It could be that the beta blocker we increased last month (to try to control his EAT) is depressing his heart function (beta blockers can absolutely do that, although Bodie has not had that reaction before).

It could be that his heart function is fine when he's in sinus rhythm, but depressed when he's in EAT. He was in EAT when the echo was performed. If he's in EAT more than he's not, the increased arythmias may be causing his heart function to be depressed. The continued depressed function could be causing the lethargy and fluid retention we're seeing.

Single ventricle kids can technically go into worsening heart failure at any time. It could be that.

We just don't know.

All that we do know is that:
1. His body doesn't like EAT. Never has. Never will.
2. His heart function is currently depressed. 
3. He's retaining some fluid and fatigues easily.
4. He's currently in EAT a lot.

Those 4 things are linked. 
We just don't know quite how. 
So, we go back to the drawing board to try to discuss the meds we're using to manage his EAT - the combinations and doses. 
And, in the meantime, start him on diuretics to help with this decreased function. I gave him a couple of doses of diuretics over the weekend and already have started to see an improvement. His stamina has improved quite a bit.

And we hope and pray for answers. These are uncharted waters for us, and we're scared. And we were thrown into them so quickly. This has really all happened so fast, which is NOT typical for post-Fontanners. They tend to be stable with lots of warning when things start to decline. 
Please pray for our sweet boy, for wisdom for his medical team, and for peace for all of us. 

And finally, when you see Bodie, please don't talk to him about this change in his heart and what we're praying for, unless he brings it up. He does understand some of what is going on, but he also just wants to be a typical kid. From what I'm writing, you're probably expecting to see a kid lying in bed. But these CHD kids can be deceiving - they compensate so well. He definitely fatigues more easily now. And needs to take more breaks. But in between rests this weekend, he rode around in a golfcart and had a blast.

He's at school today. And he'll go to karate later today (he's got a belt test to prepare for, and we don't want to miss any classes leading up to that!). He's still living as normal a life as he possibly can. As worried as we are, we've tried to never make his heart the focus of his life, and we'd like to do that as long as we can. 

Thank you so much for your continued support and prayers as we process this and sort through the options we have available to us to treat this and get Bodie back to his sweet, wild self.