I apologize about the lack of posts, I find these posts extremely time consuming to write but worth the effort for cohesion and clarity in the future. For the record, we are still not up to date with this post, but I'm getting closer. The line at the top about being up to date soon will change or disappear once I am actually caught up, which I really, really hope will be before the new year.
I ended my last post with information we got on October 13th about noticing decreased cardiac function, arrhythmia and valve leakage. We were sent home on an EKG halter monitor, which we returned after having Lillian wear it for a day. We didn't hear much back from this, so it looks like the arrhythmia wasn't much of an issue. Lillian remained home with us, spending some more time with Annabelle.
This time at home was going to be short lived however. On October 21st, Kathryn noticed that Lillian's appetite was way down, to the point where she only ate about half of what we would normally expect her to eat. Knowing that this is the first sign of heart failure, we emailed Lillian's cardiologist, Matthew Files about it late in the day, feeling that it was serious, but not serious enough to take her to the ER. Matt called us back at 8 AM the next morning telling us to bring Lillian in as soon as possible, with the understanding that she was very likely going to be admitted. The plan was to evaluate her and do some tests and see how she was doing.
The first tests of an ECHO and X-ray didn't show anything to be majorly concerned about, but Lillian was still showing clinical signs of distress. Our suspicion was that her aortic arch was narrowing, but we simply couldn't tell via ECHO. If it was a narrowing, my impression at the time was that we would have two options: either doing the second surgery (the Glenn) early or by adding another surgery for a total of four, but we needed to wait for the cardiac catheterization to tell us more. Still waiting for a room to clear up so we could be admitted while waiting to do the cath, Lillian had some blood drawn so they could run some labs that could give more answers.
The results of the labs were quite surprising, and indicated (contrary to the ECHO and X-ray) that Lillian was in severe cardiac distress. Specifically, one of her hormones, BNP, was far higher than normal. BNP, or brain natriuretic peptide, is a hormone secreted by the ventricles (or pumping chambers) of the heart in response to cardiac stress. In a non cardiac patient, we would expect the BNP level to be under 100pg/mL, and ideally under 200pg/mL in a heart patient, but it can be higher without too much cause for concern. Lillian's BNP was 1700pg/mL, indicating severe cardiac distress needing immediate attention. This was enough to move the cath from Monday as planned to an emergency procedure on Saturday, as that was what she required. The cath doctor talking to me, Dr. Agustin Rubio, said that he would have done the procedure that night if he had the required support staff, but that it was best to wait til the morning when they could come in. With the plan to do the cath in the morning, Lillian simply slept the night out as an inpatient once more.