| Tachypnea is rapid breathing. They were having
problems in weaning Max off the oxygen. Her rate was easily into the 100's
and anything over 60 is considered suspect. We were now being visited by
a new set of doctors. I kept telling them that her heart was fine. It had
been checked during a fetal echo just a week before her birth and the d0ctor
had assured us that there were no holes. At least larger than 5mm.
I remember her first echo as clear as the day it took place. I remember it so vividly because of how scared I was of its outcome. But mostly I remember it because the doctors performing the test did everything they could to keep us out of the loop. They talked in low whispers between themselves and blocked the screen from my view. They kept pointing at the monitor and murmuring obscure terms. And thus began what we now call 'The March of the Cardiologists'.
We soon learned that Maxine's heart did not have a small hole; it had two huge holes. And instead of the normal allotment of two lower valves, she had a large common one in their place. AKA: complete atrioventricular (AV) canal defect. In essence, the entire center section of her heart was missing.
To say I was angry is a gross understatement. And while I understand now that diagnosis of conditions like this are not perfect, it seems to me that this was not an 'oops, sorry' situation. But then, no one ever did say to us, 'oops, sorry'. Instead we heard a lot of statistics and terms being tossed around.
We saw over seven different cardiologists before Max had her surgery to correct the defect. And never did they say the same thing twice. We went from "we'll treat her with meds until she is six months old and then do the surgery" to "what do you mean 'six months'? she's having this surgery next week". They even managed to over medicate her and shut down her kidneys, adding a few extra days to our visit. I had begun nicknaming the cardiologists we saw after the seven dwarfs, but soon stopped because I like the seven dwarfs.
When we finally had time to pull in our wagons and survey the landscape, it was evident that Max had to have the operation. My cousin, doing her surgical residency at Boston Children's, confirmed "the sooner the better." And with that, we moved up in the world: to the sixth floor and the Cardiac Intensive Care Unit (CICU).
By this point, we had become pretty familiar with the NICU and its staff. We had become acquainted with some of the other parents and many of the nurses. In an obtuse way, we were comfortable there. The CICU, by contrast, turned all that on its head.
Doctors. Doctors everywhere. All of them reading charts and looking very concerned. A lot of them seemed to be students. All of them were a pain in the ass. The same inane questions over and over again. Don't any of these people read the charts? We shared a room with three other children, and Maxine's problems were nothing compared to those of the other kids. Hypoplasia and a heart-lung transplant make AV canal defect look like an ingrown toenail by comparison.
During the consult with Maxine's surgeon immediately following the operation,
he warned us that he had some problems with the reconstruction of the
valve. This became more apparent later as her tachypnea was only slightly
lower than before. Still, there were some definite signs of improvement
in other areas. Her repaired valve now had a very distinctive murmur;
one that even I could hear clearly. They used to send the first year med
students over to get a listen since it was so distinct. I began to refer
to Max as the 'Whirlpool'. But despite the big red zipper on her chest,
she was a little better and seemed to be improving more each day. My only
wish at this point was that she would take a dump.