Thursday, January 19, 2017

Meh

Today's appointment was...interesting.

The good news is that Bodie's heart function hasn't gotten any worse.
The not so good news is that it also hasn't improved at all. 
The heart failure doctor said he was really trying to find improvement on the echo, but he really didn't see any.
(We don't know what his bloodwork looks like yet, since we did that at the end of the day.) 

Man, this kid is SO good at compensating.

I'll be honest.
I'm bummed. 
I had really hoped we'd see an improvement on his echo. 
He just looks SO GOOD from the outside.
But his heart failure doctor (and heart failure docs are negative by nature) actually said that a month just isn't much time to see change. We need to see how he does over the next 3-6 months to really determine whether the heart will rebound. I needed to hear that today.

The fact that he DOES look so good from the outside is a very, very good sign. We are all encouraged by that. Because he is stable on the inside and looks so good on the outside, we have tabled the transplant discussion for now.

However, if Bodie's heart function doesn't start to pick up fairly quickly here, that conversation will be front and center. For now, it's just the elephant sitting in the corner, just breathing heavy and giving us dirty looks, while we all smile and pretend it's not there. And see the heart failure team again a month from now.


So we wait and pray.

We're getting pretty good at that.

We also made one medication change.
Bodie is having persistently high heart rates, sitting usually in the 130s to 140s. That's not dangerous to him now, but isn't good for the heart in the long term. Sitting at those rates day in and day out wears on the heart and can cause further heart dysfunction. His electrophysiologist just isn't comfortable leaving him like that. So, we're starting him on Carvedilol, a medication commonly used to treat heart failure, which has the added benefit of a small beta blocker component. We know a number of heart friends on it who've seen significant improvement in heart function while on it, so we are hopeful.

To say that we're nervous going back on beta blockers is the understatement of the century. BUT he is starting out at a very low dose (unlike the very high doses of Nadalol he was on when he went into sudden heart failure). So we're hopeful that a small dose will be just enough to bring his heartrates down without triggering further heart failure. And the bottom line is that we trust his team and know that if they are recommending it, it is because they believe it is in Bodie's best interest.

So, lots of prayers tonight:
1. Pray that Bodie tolerates the new medication well, and that it HELPS his heart function and brings his heartrate down without causing further heart failure or negative side effects.

2. Pray that he continues to feel really good, as he has lately. Pray that his energy stays up and he continues to eat like a teenage boy. 

3. Pray for peace for all of us. Today was a reminder that this heart failure is not just a quick little detour off of our journey, but a place we're meant to stay for some time. And it's an exhausting place to stay. We're all worn out by the last few months, and the promise of it continuing doesn't exactly help replenish our reserves. Please pray for us to find ways to find respite amongst a really exhausting journey.

Bodie looks good from the outside. 
He really really does.
I was marveling at him during his echo today, thinking of what an amazing kid he is and how far God has brought him with this crappy little half a heart. 
We are so, so blessed.

When we got home tonight, he went to change his clothes and got quite a start when he pulled his shirt off and remembered that he didn't let me take any of his stickers off at the hospital.
He picked them all off himself (he also takes out his own IV's these days) and found a much better place for them.
Also known as our bedroom door.
As you can see, he's still got his sense of humor intact. 
Thank GOD for that! 

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Tuesday, January 17, 2017

Holding steady...maybe

I've been getting a lot of questions lately about how Bodie's doing, and the answer is, we don't know. 

From the oustide, he looks good. Actually great. Definitely better than he has in months. In some ways, better than he has looked ever. 

He has so much energy. 
His color is so much better.
His sats are back to baseline (typically mid 90's, with dips down to the low 90's here and there).

He is still eating us out of house and home. His first words every.single.morning are "I'M STARVING!!!" and he walks in the door after school asking what's for dinner and when we're eating it. It's sort of like having a teenage boy in the house. It's amazing and something we have NEVER experienced with Bodie. He told us he was hungry more in the first 2 weeks after this last hospital discharge than in the first 6 1/2 years of his life combined. We don't really have an explanation, other than to assume that the beta blockers he had been on since infancy had been stunting his appetite.

He just looks better all the way around.
We could almost convince ourselves that his heart function must have rebounded.
Almost.

But he had a rough week last week, where he wasn't feeling well again, complaining of tummy aches and being tired. His heart rate was running higher and his sats were running lower.  He has bounced back now and seems better, so we're just assuming he had the tummy bug that had been going around school. But it was a not so subtle reminder that things aren't back to baseline for Bodie, and that his reduced heart function makes it that much harder for him to fight off bugs.

And his heartrate continues to be really erratic. It doesn't seem to be bothering him nearly as much as it used to, but it's not good for him long-term. We don't have any answers on that yet.

And, in truth, we have NO idea how things are looking on the inside. We HOPE that because they're looking better on the outside, that correlates to an improvement on the inside. But, if we know nothing about our son, it's that he's good at compensating. So it's entirely possible that nothing has improved on the inside. We just don't know.

We have a battery of tests and appointments on Thursday up at CHLA, and we'll be seeing both the Electrophysiologist and the Heart Failure team. And we will know more then. 
We covet your prayers for that appointment. 

Please pray boldly that his heart function has completely rebounded. 
Pray that damage they thought a month ago to be irreversible has actually reversed itself. 
If not that, then at least some improvement. 
PLEASE pray for improvement. 
WE NEED TO SEE IMPROVEMENT.
Pray for his BNP (measure of heart failure via blood test) to have continued trending downward. 
Pray for his heart function (measured by echo) to have improved. 
Please pray for our boy.

So much is riding on this appointment. 
And we really have no idea what we're going to find. 
So you can probably guess how high nerves are running in our house right now. 
Please pray for peace for us all going into this appointment. 

And just pray for our little rockstar. 

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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 sports...my 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.

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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.
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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. 
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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. 
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Big Picture: GOOD.

The last few days have been such a roller coaster.

THE GOOD. 
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. 

THE BAD. 
(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.
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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!
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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! 
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Done!

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!  

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