We're back!! I thought I had retired this blog. That is why I stopped posting on here, very unceremoniously, which I apologize for by the way, I figured Lily was so healthy, there was no reports. We went to the cardiologist every 6 months, got the all clear for another 6 months, wash rinse and repeat.
Now don't get me wrong, we have had some ups and downs medically, such as a kidney infection that hospitalized her. Her INR goes up and down so frequently, and sometimes it shoots so high she becomes a fall risk, that we have to weigh our options of safety. But compared to what used to be, that is nothing, speed bumps. Well, about 2 years ago now, maybe a year and a half, we noticed a hole (VSD) in her heart. At first Dr.R started wondering if she had an infection of the heart, there were so many things thrown around because you don't just get a "new" hole in your heart out of no where. So I went home, stressed, for the first time in years. Cried for the first time in years over her cardiac conditions, then I started thinking about things because it just didn't make sense to me. Well that night I had a dream that took me back to her 4th open heart surgery. Dr.C was telling me how when he was putting in her mechanical valve he noticed a very small hole, but not big enough for him to close. He said it would have done more damage at that time do it, because of how she develops scar tissue. He told her father and I it should close on its own.
So in the morning when I awoke, I dug out the journal I kept from her hospital days, found the entry from her 4th surgery, and sure as the sky is blue, I had it written down. I emailed her cardiologist immediately. (Her surgeon retired, and the hospital she had all her surgeries at had merged all its patients with the children's hospital, so they didn't have all those notes.) So he requested everything, I received and email later that same day telling me I was Clara Voyant and thanked me for keeping that journal as it helped.
So now, fast forward to today. Up until recently, Lily, even though there was that hole, everything was fine, it was there but it wasn't bugging anything. She does have what is called Sick Sinus Syndrome or SSS, but it isn't in a constant state.SSS is pretty a uncommon heart rhythm disorder. It is not specific to a disease, but rather to a group of symptoms that indicate the sinus node, the hearts natural pacemaker is not functioning properly. How did this happen? Well, Lily had an ablation after her 3rd open heart surgery because of her heart arrhythmia, and it weakened that node. Now, when her heart is at a rest rate it dips to a dangerously low rate at some points, it is more common when she sleeps. But it isn't a constant. So we watch, we wait, and one day she will need a pacemaker to keep her heart beating, but no yet.
The hole in her heart started out at .5mm (Think mechanical pencil lead). That's not a big hole, that is why we watched and waited. 6 months ago we were fine, but something shifted, and we think it has to do with her St.Judes mechanical valve. Dr.R thinks it is either 1: to small; which is very unlikely because the valve is a 19mm valve, which is the size of an adult female. OR 2: the valve itself is failing. She has leaking around the valve, which is screwing up the pressures in her heart. We have to watch those carefully because of the repair she has. The hole has gotten bigger and now when the heart is constricting, the blood not only goes through the hole, it gets pulled back, causing a back flow, mixing blood. The hole is still relatively small, I wasn't given a size this last time though.
Our course of action is a cath and a transesophageal echocardiogram. This is to get better views of what is going on in there. At which point they will take all that information to their surgery conferences and start formulating our next steps. If the valve needs to be replaced like he thinks it needs to be, she will have to have another OHS, she will go on bypass, and that scares me. Lily's heart has a really, really hard time restarting. Remember that SSS I was talking about, that comes into play here. I don't want her having a OHS being the reason she has to get a pacemaker.
I am a nervous wreck, as I always am, I will be until it comes time to walk through the fire. On the day of procedures and surgeries, I am so calm, and I know it is God's grace. He'll see me through this, he'll see her through this. And when we come out on the other side, we will be stronger for it, is just the passing storm and learning to dance in the rain again. It's been so long, I guess I've forgotten how.
I will update as soon as we get news of a date, or anything happens with Lily.
Transplant Day 8
22 hours ago