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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47 comments:

  1. Crete,IL
    Love, Eric, Amanda, Morgan, and HLHS buddy Austin Prayers coming from Trinity Lutheran Church. We love you!

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  2. Prayers from Milwaukee, Wisconsin, from another HLHS family.

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  3. Pros continuing from my family and friends..add El segundo and conneticut to ur map. Love u guys

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  4. We're praying, too, in Bakersfield, CA! -The Kuhns

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  5. Prayers for you all from Oklahoma.

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  6. Just prayed specifically for your requests and will continue to do so. I have a single ventricle child and a recently diagnosed epileptic =( I know just how frightening seizures are...and I am so sorry you are having to go through this. May God continue to hold each of you and give you strength, peace and wisdom. We are praying for a full recovery! Much love and prayers to each of you!!!

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  7. Katherine and I are praying for you all from Chino Hills, CA! Keep up the fight, Bodie!

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  8. Praying for your specific requests in Westminster, CA!

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  9. Praying for All of you from Bellflower CA ❤️

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  10. Praying for you and your family here in Mexico City.

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  11. Continuing to pray from San Antonio, Texas! -The Johnsons

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  12. Amy - we are in Malaysia right now with the kids and have been thinking of Bodie and you. Sending prayers and lots of positive thoughts your way.
    Anita Abbas

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  13. Light and prayers coming from Bethlehem, PA. I have a HLHS warrior and a mother with a seizure disorder-they are indeed terrifying to witness. We will be thinking of you and your family.

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  14. Sorry for your bad day. Praying for rest, peace and recovery. "He tends his flock like a shepherd: He gathers the lambs in his armsand carries them close to his heart; he gently leads those that have young." - Isaiah 40:11 from Orcutt, CA

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  15. Jennie McCollums is praying for Brodie in Marietta, GA.

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  16. Nixa Mo!! We are praying for you Bodie!! Praying for the strength to get through all of this and praying hard for your heart to recover and get to full functioning!!! The Yount's

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  17. Prayers for Bodie and family from Coos Bay, Or.

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  19. I'm so sorry to hear what you all are going through. I'm definitely sending hugs and prayers your way. Our family is praying for you all in Arlington Hts and Buffalo Grove, IL. Julie Kim

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  20. Prayers from Pownal Vermont
    from a friend of Dana's

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  21. Prayers from Chattanooga, TN! A friend of Melissa's and keeping updated on your son! Praying they have the cause correct and the healing continues.

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  22. Sending love and prayers from Dallas,TX. Tracy Roybal (Oliver Thomas' aunt)

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  23. Gilbert,Arizona - the blair family

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  24. Praying for Bodie in Elizabeth, CO

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  25. Praying for Bodie in Elizabeth, CO

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  26. Praying for you all in Eureka, MO

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  27. Prayers from Santa Fe, NM too! Theta Love, Nicole Duggan

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  28. Daily prayers for you all from Brooklyn's grandmother in Clifton Park, N.Y.

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  29. Praying for complete health restoration for Bodie! God is the ultimate physician and may His hands guide those working with Bodie and may His voice of instruction be the voice heard by them as well. May God's peace be with Bodie's family during this time. May they all remember to Be Still and know You are God! ~All the way from Pensacola Florida, Pam Watts

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  30. Praying for Brody, and praying you and your family find peace, God hears your prayers, he is the prince of peace, and the great physician,Praying in Philadelphia PA.

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  31. Praying for Brody, and praying you and your family find peace, God hears your prayers, he is the prince of peace, and the great physician,Praying in Philadelphia PA.

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  32. Hayes family is praying in Yorktown VA! Grandparents are praying in Ferndale, WA
    and Denver, CO. We love you guys! Hugs, Aaron & Brooke

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  33. The Breiland's (Eric, Allyson, Jack & David) are storming the throne from Appleton, WI God does amazing things beyond all understanding. We pray for strength for all of you, clarity and good sleeps for the team of doctors and prayers of thanks for the team of believers fighting for Bodie.

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  34. Our little girl, also in heart failure, had this happen as well. She was home and it was the middle of the night. I heard strange sounds on the monitor and found her having convulsing seizures that would not stop. The paramedics couldn't stop them either. She was completely un responsive. Finally at the hospital they checked her Blood sugar and it was 11! We took her off her beta blockers for 3 months and she continued to have low blood sugar so she's back on now and we just poke her finger several times a day and make her eat all the time even if just a bite or 2. Im going to follow your journey. Perhaps our kids experiences can be of help to each other. Our daughter is also on the down side of decline right now with very high RA pressures. My prayers go out to your little guy tonight. May you feel the love and parers surrounding you and find Hope!

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  35. Thank you for sharing such an informative update. We are praying for your heart warrior, and for all the specific things you mentioned. Please add Columbia, MD to the map.

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  36. I'm glad Marie Tieck informed Christine and me of your blog, so that we can pray not only for the complete recovery of your beautiful boy, but also for specific ways for that to happen. Thank you.

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  37. Prayers being sent from O'fallon Missouri

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  38. Prayers from Grand Forks, North Dakota.

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