I had a huge info. overload this morning when a new Cardiologist came by to talk to me and see Miss K. Nobody really had informed us completely about what Miss K really has, all we've been told is she has SVT, hers is very stubborn, they didn't think anything in particular was causing it, and they thought she should outgrow it by her first birthday. Pretty basic. Today the new Cardiologist let me in on what's really going on with her. I just spent the last hour researching what he told me and looking into what we should expect.
So here's what's going on! She actually has a form of SVT called AVNRT. In laman's terms it means she has an extra circuit in her heart that is a slow pathway where her blood is being pushed through. They don't think she's going to outgrow it because it's been so stubborn to treat thus far. They're already planning to have her in the operating room after she turns 5 if she can wait that long, they will be doing a Catheter Ablation. In laman's terms they will be placing several flexible catheters into one of Miss K's main veins forcing them up towards her heart where they will use electrical impulses to induce the arrhythmia, and then ablate (destroy) the abnormal tissue that is causing it. They don't like to leave infants on Amiodarone for more than 3 months because it's highly toxic (yikes!) so when Miss K turns 3 months they will be taking her off of it and putting her on Flecainide. Then they get to hope the new drug works and will hold her off for a while. By the age of one she shouldn't need drugs, she should be OK and not be going into SVT but they're sure it will most likely come back by her 5th birthday, thus the reason for the Catheter Ablation plans.
But on a light note, Miss K is doing great, we've now officially gone 24 hours straight without SVT, YAY!
We are officially upstairs on the 3rd floor in regular care :o). We got moved from our first room to a new room this morning because they needed the room we were in for another patient so now the room we're in is tons bigger and has a bed and it's own bathroom and shower in it :o). Here's to better sleep the next few days and better Hygeine I hope!
We are bringing her Amiodarone dose down from 2 times a day to 1 time a day starting tomorrow. They will observe her on one dose until Wednesday evening or Thursday sometime and make sure she's OK with it then they'll release her!
So for sure there is light at the end of this tunnel, lol! She's doing great and we'll be going home, we actually have a day in mind now :o).