Sorry, trying to write from my phone in the hospital today. I tend to lose what i was saying typing this way, which is weird but might as well give it a shot. A few updates, Currently Bella is in the ER; awaiting transport to main campus, where she is going to be admitted for a little while.
The loop recorder (type of ECG monitor) that’s implanted in her chest has gone unmonitored for months. We recently got her specialist in Toledo to take over the monitoring, and he discovered Bella has been going into SVT multiple times a day; Anywhere from 8minutes to 2 hours for the past month or more. Which can put quite a bot of strain on her heart.
On top of that lovely news, which is new to her symptom list and a cardiac issue, she has also had a persistent headache almost as long as the SVTs have been occurring without relief. She’s been loosing time, as we call it, where she’s not really blacking out, but unable to remember spans of time, typically when all her symptoms are acting up more. She’s been nauseous, in pain, and just miserable. Im doing my best to help, but Unfortunatly it’s been too much for us to handle on our own.
Her doctor in toledo scheduled her for a heart ablasion to attempt to get her heart to pump correctly rather than all the SVT. So next month, barring her miraculously getting better (crosses fingers) she’s going to have a type of heart surgery. The complications are scary, but she’s having such a hard life if this can help we’re all for it. If there’s complications or her heart gets ablated too much, she could end up with a pacemaker or implanted defibrillator, let alone anything else I’d rather not think of.
We’re scared, trying to figure this all out, and now we have an operation in toledo, trying to figure out how the logistics will work, how to take care of Savayah while Bella is going to need much more care than usual while she recovers… It’s gonna be hell.
We’re going to have to push off our trip to Stanford and likely stay out in toledo for a few days post surgery just in case there are any complications, but we’ll figure something out i hope.
On top of everything else culminating to today, we talked to her case manager at the NIH to try and update them to her new symptoms, and unfortunatly that didn’t help, because they’re waiting on the genetics testing and the hard copies of a bunch of tests we recently had. Which lead us to calling her genetics doctor, who finally called us back and said he made a mistake when ordering it and will resend the test, order and blood samples today. So 2-3 more months on top of what we’ve already waited for the results, and we’ll likely call them to ensure it was done correctly again.
Anyways, it’s been a fun last couple of weeks but after we got off the phone with genetics, which we have been waiting on for months and is just now starting, i figured i should be sure to write something before i get too busy or forget. It’s been hell.
I will get back and write more, as soon as i can, hopefully from my laptop, where i can easily get my thoughts out, but for now i ask you to share, follow, and if you can find the kindness in your heart please donate. I promise I’ll love you forever and be your new best friend. Also #helpthehero on Facebook and Instagram can be checked out and followed if you’d like. It’s gonna be a fun rest of the day.