Freak Out Mode

I am in total freak out mode.  And by total, I mean T.O.T.A.L.

Friday is the day I dread every couple of months (or weeks, depending).  Friday, the Dancing Queen has a cardiology appointment.  Oh how these appointments make me worry, make me fret.  My insides turn to mush.  I want to do nothing but hide my baby and pretend like she is fine.  Of course, I also want her to be seen so that I can be told that everything is fine.  However, we have never been told everything is fine and I highly doubt that will happen Friday either.  (Cardiologists won't even tell me life expectancy, so getting a "she will be fine" is virtually impossible.)

The Dancing Queen has had too many cardiology appointments for me to remember, but only two of them contained goodish news did not convey bad news.  The first appointment where we were told nothing bad turned out to be wrong! At the next appointment, we learned everything that had been said was in err and lots of bad had been going on.  The second time we were told nothing bad was the Dancing Queen's last appointment, during which we started to reduce meds because the Dancing Queen was allegedly doing well enough.  Within a week of that appointment, the Dancing Queen had to be placed back on the meds that were reduced because her heart couldn't handle being without them, i.e., she was not doing as well as the doc had thought.  (Please recall that medicine is an art and not a science.)

So, I am bracing myself for the bad news.  Don't get me wrong.  I don't want bad news.  But, the Dancing Queen's health hasn't been leaving me feeling that this appointment will be groovy.

First, we have her discharge instructions from Sunday, where the ICU attending doc made a specific point of telling me that the Dancing Queen MUST keep her appointment with the cardiologist on Friday.

Second, we have the fact that her resting heart rate is still sitting between 120 and 130, way too fast for her age.  That is a sign of heart failure.  While the Dancing Queen has pretty much been in heart failure her entire life, after her last open heart surgery in September, we were hoping her heart would be healing.  I don't want to even think about what that means.  Even if her heart has healed a little, it is still working too damn hard.

Third, the Dancing Queen is still dependent upon medications that are only supposed to be needed by people in heart failure.

Fourth, before the Dancing Queen's latest illness, it had been determined that she was only up one pound since last April.  It is almost a certainty that by Friday, she will have lost that pound (she is currently not eating for a second week in a row), meaning she will be the same size she was a year ago.  Doctors don't generally like that and pediatric cardiologists really don't like that (and I'm guessing the Dancing Queen's GI and endocrine docs won't like that either and we see them Friday as well).  With this kind of weight issue, the g-tube threat becomes a real possibility and I don't really think it would work.

The real question remains, how to stay calm and still hope for the best?  I want to believe that my daughter is on the path to better health, but I can't see it.

My biggest fear is that we will be back to where we were in December 2009.