Sorry for it being so long since the last post. I’m back to not getting much rest, and the rest I do get hasn’t been exactly restful. I’m not exactly sure what day at the hospital I wrote the last update, so a little recap for those not keeping up with every update, and to get me back on track, here’s a little recap. Bella’s ablation was last week Monday, so 8 days ago from the time I’m writing. We went back to the hotel for recovery, and were able to do the first day out pretty decently. Bella didn’t really leave bed, and was achy but not too bad. The day after, a lot of real bad chest pain and headaches, and we went into the ER. They found her Troponin high, and though it could be from the ablation, they wanted to keep her overnight at the very least to monitor it and look for a downward trend, to determine if it was in fact from the surgery or if it may have been a heart attack. Luckily the levels went down and we were able to go home on time Friday.
The ride home was nothing too spectacular. Tried getting Bella to eat normally, and drink even though she just had a surgery and the achiness and the pain made it hard for her to want to do much of anything. We got her eating as much as possible many times a day so she still gets the fuel her body needs, and of course drinking and staying hydrated, but her headache has only gotten worse.
Skipping forward to today: Bella’s only relief is to lay perfectly still. She says it’s weird, her heart may be feeling better, but it could just be masked by the overwhelming headache. She’s full of energy from laying still, trying not to move, making it hard to sit still, and the vicious cycle continues. However it’s only getting worse for now. It’s to the point she can’t leave bed even with help. The pain is just too much. We keep trying to reach out to her doctors, and aren’t really getting anywhere. Meds and Oxygen don’t even give a small relief. She feels bad enough to go to the ER, but doesn’t know if she’d even make it that far.
Her heart rate has been lower than before. Even with the pain it hasn’t elevated too high that many times, so we can see possible progress at least with that, but we won’t know for sure if it’s had any effect for 6-8 weeks, and even then only if we can get this headache to go away, or at the very least managed. Without a response from the meds, we’re not sure what else to do. The best she feels is laying flat in the dark, and with that it’s still around an 8/10 on the pain scale. She describes it as the worse pain she’s ever felt, and at this point and all she’s been through, that’s really saying something.
We’re waiting to hear back from her doctor. There may be a possible CFS leak, or a cerebrospinal fluid leak. She’s had clear discharge from one side of her nose, the headache that’s worse with movement and untouched by medications, blurry vision, and sometimes trouble hearing, but without finding someone well versed in CFS leaks, it’s near impossible to get the right testing and procedures done.
Or next trip is supposed to be to the University of Stanford in California. It’s going to take a lot to get us there, luckily due to some amazing people we have a small travel trailer to help us along the way. It’s going to be hard in winter to make it, but they also have an amazing doctor we can see there not only for her overall condition, but also specialists who deal with the CFS leak that we’ve suspected in the past, but they couldn’t find with their methods. It’s possible that with the CFS leak repaired, and the ablation she already underwent, that her life could be greatly improved. As long as the changes she’s been feeling with her heart stay and aren’t just flukes for the time being.
I’m exhausted trying to hold everything together and as much as I hate asking for help we really need it big time for this next trip. They’re willing to accept us for the new studies and research as soon as we’re able to get down there, it’s just making it there and being able to keep everyone alive while doing it that’s the hard part. Please keep her in your prayers.
As always please share this far and wide, follow our story at #helpthehero on Facebook and Instagram. Bella usually post’s relevant stories and updates when she’s able too on those. If you’re able to donate to our fight, and help us get to the doctors we need to visit, please hit the donate button, every little bit helps us to get where we need to go. I love you all and I’m sorry if this post isn’t well put together, I’m trying to get out a lot of info without forgetting anything too important. Thank you for reading, and I hope you have a wonderful rest of the day/night.
Had to take Bella to the ER. She now has a fever, the headache is overbearing, and heart rate uncontrollable. Please help us share the story, next stop to Stanford looks like it needs to be as soon as possible.