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!