Surgery moved up

I mentioned in the last few posts Muriel's new full-time pulse rate "Event Monitor".   This device, which looks oddly like an ancient cell phone, tracks her heart rate continuously and sends alarms to a monitoring company if her rate falls below a set threshold.  The concern is that her average heart rate has fallen steadily for the last three months or so, and she is currently at risk for heart failure.

I also mentioned we recently had a Catheter Lab performed, to see if she is physically ready for the final plumbing surgery (the Fontan Procedure).  We have been told all along to expect the need for that surgery between 18 and 24 months, and that a drop in blood oxygen levels would be the trigger.  That has not happened.

We had the lab performed to see if she would be ready *early* for the Fontan, so we could install the pacemaker at the same time, and only open her chest one more time.

The results of the Catheter lab were positive - she is ready, and could actually have the Fontan at any time.  We went ahead and scheduled it for 9/26/13 - roughly 4 weeks from now.

Then her alarm started going off.  A lot.

This led to a handful of conversations with medical staff, and I made case to move her surgery up.  The basic idea is management of risk.  If the risk that she will have a monitor event that will cause us to have to drop everything and fly off to the hospital for immediate surgery is higher than the risk of performing the surgery sooner than 9/26/13, why wait?  The former risk is apparently reasonably high right now.  The latter risk is almost nil - there is no expectation that she will significantly grow in size in the few weeks difference.

The result is a new schedule date for Monday, 9/9/13.  We have an appointment with her new Cardiologist (Dr. Van Burgen, who happens to be the head of the Pediatric Surgical Heart Unit and very familiar with our case) next Thursday 9/5/13.  We are attempting to get her bloodwork drawn that same day, and arranging for a spot at the Ronald McDonald house next to the hospital for Sunday night 9/8/13.

We met with Dr. Ilbawi, her chief surgeon, this past Friday afternoon.  He is an amazing man with a talent for easing our anxiety, at least temporarily!  He went over the whole set of procedures again - her previous as well as upcoming.  Mostly we had heard all of it before, but its been a year.  The refresher was well received.  Her particular situation is rather unique, and there are some aspects of her condition that suggest she will have an easier time recovering from the operation than other children receiving the Fontan.  That would simply continue her trend of amazing everyone with her stamina and strength.

Its a bit unnerving to be at this point.  She looks and seems fine, but I can't help but be worried.  I haven't talked much in these blogs about my own state of mind, or Megan's, but stress levels right now are very high.  I'm having a lot of trouble concentrating on much else - kind of a constant anxiety.  Thanks to all who are wishing Muriel well and supporting us in this time.  I'm confident she is in good hands and all will be well.