Monday, Bloody Monday

Today is all about the blood and flowing of fluids. Not such a great day to be totally honest, but if you have been riding the Bernie Train long enough, you know it comes with a lot of twists and turns. And you get both. Sometimes lots of them. 

Bernie still requires oxygen and apparently it's really drying out her nasal passages. Hence the dreaded nosebleeds. She's had about 4-5 of them so far today and as an anticoagulated young lady, that means they can last much longer and be more intense. Difficult when you couple that with pain management, basic recovery, and the fact that you are also unable to eat since you're throwing up with a sternotomy and chest tube wound. We've got more of a humidifier element added to the blow by tube so that should help a bit. 

 

Her procedures did not start until almost two hours later than expected. That's a long time for a kid who wants to eat, but we finally made it. 

 

She's peed, pooped(yay!), vomited a few more times, got her chest tube out (yay!), and had her discharge ECHO. The discharge ECHO shows that the pressure across her mitral valve is drastically higher than her post-op ECHO (went from 2 to 15) and is about what it was before surgery.  This was disappointing. We had to then quickly go to the Cath lab for a type of x-ray of the beating heart to show that the valve was not the issue. It's not. It's working great. But, yes, pretty scary for about 30-45 minutes until the valve leaflet function could be ruled out. 

 

 

Another suspicion for this higher gradient is that she is anemic which can falsely elevate said pressure gradient. Her type and screen indicates this is an issue. She's getting a blood transfusion right now to offset this. We are going to give it another couple of days and let her chill and recover, get moving a little more easily and we're hoping in another couple of days the ECHO will show some different numbers. We know Bern takes time so we need to give it to her. 

 

Now if it takes more than time, a more back of the brain idea is that this size valve really need to be bigger than it is (despite being the best and most reasonable size and fitting well) and shoehorned in along with likely a pacemaker. Yes, this may mean another operation. Don't know when. That will depend on her.  

Her heart rate right now is higher than her baseline and we are hoping it slows down a bit more to ease up those pressures. We are really hoping this changes. 

 

Bernie herself has had a terrible day not knowing any of this technical stuff by name. She obviously feels terrible and even presents didn't get very far today, even if they did help slightly. She hasn't eaten in 2 days and has no interest in food. 😞

So how am I doing? Honestly today sucked. All of those feelings of needing to rush back into surgery couldn't  help but move to the front of my brain. And, no, there's nothing anyone can readily do for me. My clothes are spattered with blood, vomit, and oxycodone. I taste salty,  bloody secretions on my own skin from kissing Bern and holding her close during the day's  seemingly endless procedures. And I will do it all over again tomorrow for her if I have to because that's what you do as a parent whose child is in need. Anything it takes. Because she is who she is and so very worth it. 

 

So turn it back on, Warriors. You're in it. We will be here for a bit more and can't quite fully celebrate yet. But someday we will. 

Thanks for being there.