So as most of you who’ve been keeping up may know already, but last week Bella was admitted to the hospital for new symptoms in the form of supraventricular tachycardia (SVT). For those who don’t know, SVT is an abnormally fast heart rhythm arising from improper electrical activity in the upper part of the heart. This is different from her usual fast heart rhythm attributed to Sinus Tachycardia, which either way they don’t know What is causing the abnormal rhythms. She got discharged last Friday, with a new medication to try, and it’s been all downhill from there.
The medication is meant to keep her heart rate from getting so high. In most cases the side effects are minimal to negligible, however in Bella it causes extreme fatigue, dizziness, nausea, and headaches. Also it does nothing to slow her heart rate that we’ve been able to see. While at the hospital, they said it was just sinus tachycardia, and they weren’t going to dig further. We even have it on a voice recording that the attending doctor doesn’t understand her case, it’s the only case like this he’s seen in his 17 years as a doctor, it’s beyond his scope of practice, and he’s unable/unwilling to learn or read the materials we prepared for him to help explain what we know thus far. Never once did anyone say there were any episodes of SVT, and even when we asked they denied it.
SO skip forward to today. About a week total on the new med to “stick with it” and see if it helps. Four days after Bella was discharged, we had an appointment with her specialist in Toledo. Apparently the reports from home hospital say SVT quite a few times, and Specialist seems to think there are quite a few bouts of SVT from the Loop Recorder downloads. Also with those reactions she should stop taking the medication, because it’s not helping and making a horrible time even worse. Either way it’s all conflicting, we’re not 100% sure which is going on, and the specialist would like to perform an electrophysiological study that may include an ablation of Bella’s heart to correct the beating.
Further conflicting is that the risks can include her needing a pace maker if burned incorrectly, death if they stop her heart and can’t revive her, and making things worse which could result in either of the other two, just not right away. As well as a myriad of other not as severe side effects, but those are the big one’s we’re worried about. Either way it’s a sedated procedure, and Bella doesn’t do well with anything sedative. So bad that she got her port placed without anesthesia and a nurse slapping her face to keep her from passing out from the pain, where they’d have to intubate her and sedate her, possibly making things much worse. So lots of decisions to be made in the near future, but before that we’re trying to ensure the study is even needed by making a log of all activity, episodes of pain, and anything else we may find relevant in order to compare her actions with the recorded instances. So it’s not just her getting up to pee in the middle of the night rather than a false SVT. However this also hinges on the doctors listening to the patient, and it’s increasingly harder to do, even though we’ve proven we know what we’re talking about on multiple occasions.
So basically, we have to decide in a few weeks if Bella should get this study done. The only reason we’re considering it is because of the living hell Bella is in since the new pain and symptoms have started, and have not even begun to let up; and if it is her heart beating erratically due to a “short circuit” or something like that in her heart, the only way to stop it is if she gets the study done. We’re doing our best to gather the info to make a smart decision with so much riding on it all, but it’s hard to figure out what to do with the limited amount we’re able to study, research and present ourselves.
While doing all this, we’re still working to give Savayah some sort of Christmas, we got a cheap tree from one of those corner lots, and are gonna hit up dollar tree to decorate it a little. In the mean time, Bella has been told to keep resting, try to limit activity to not aggravate the condition, and pretty much stay patient until the procedure. Though this may fix one problem, it’s only going to bring her at most back to just before the new symptoms. Still pretty bad, but a relief from what’s going on now.
Anyways, that’s a peek into our last few days. I’m tired from driving and taking care of everyone, and need to try and get some rest for the night. More to come as it unfolds, hopefully things just get better, but I’m not going to hold my breath. We’re fighting hard every single day to make progress and try to get Bella back to her former amazing self. Savayah misses her mom when she’s too sick to leave her room. I miss Bella being happy and uplifting, and full of life and energy. I just want to fix it all and I’m helpless in this fight. We’re going to get her better. I have no doubt.
Lastly thank you all for reading, it feels good to get it all out there sometimes. It also helps process all the info outside of my own head. So again thank you for reading, and please share. If you’d like, follow #helpthehero on facebook and Instagram. As always if you’re able to help please donate to our travel and testing fund through the link in the home page. Anything else just ask and I’m happy to tell you to the best of my ability. Have a nice rest of the night/day.