Archive for July 13th, 2005
fifth
July 13th, 2005. Published under parents. No Comments.
Over the last week or so, the whole lot of us have weathered some fairly heavy stuff. Most came by no surprise, since Danielle and I have known for months the types of things Elizabeth would be facing after her birth. Thursday night and most of Friday, immediately after her surgery and for many hours after that, Elizabeth’s blood pressure and other critical measures were very unstable; and night before last she lost enough blood for the medical staff to be concerned. Still, much of this was at least implied over the course of months of consultation with everyone from the obstetrician to the pediatric endocrinologist.
Today, we were surprised to hear that one of Elizabeth’s cardiac lines was removed. The medicine it had been delivering was simply added to another line; but still, every little thing removed, every little thing that isn’t a baby that’s taken out of her bed, the closer she is to recovery. She also surprised us with a lot of activity, between short burst of heavy respiration as she tried to get rid of some bile in her throat, to the animation of her facial features as she apparently tried to cough the bile up, and tried to cry. Hers was a pitiful, impotent, silent cry; but Danielle and I heard it. She had even showed gumption enough to have almost completely pulled out one of her nasal lines, so the nurses have her left hand restrained.
With so many small happy surprises, the last surprise hit like a shockwave. Danielle’s dad had been told or given the impression that Elizabeth’s heart would probably need replacing by a transplanted heart some time shortly before or after reaching early adulthood. I said, “No, that can’t be. They wouldn’t have been talking to us about her fertility issues [as a result of Turner's Syndrome] if she wasn’t going to be healthy enough to carry a child anyway.” I was wrong.
You see, at the end of the third operation (the Fontan), Elizabeth’s cardiopulmonary system will have been restructured to be as efficient as it can be with the available tissue. Her right ventricle will be pumping blood to and from the body, normally the job of the left ventricle; and the residual pressure will be used to get blood to and from her lungs. Since neither ventricle alone is well adapted to pump against the pressure of the whole blood system, eventually the right ventricle, flying solo, will start to fail. The failure will likely be gradual, but it appears nearly inevitable.
This means that, eventually, we will likely be put to the task of deciding whether to subject Elizabeth to what some people call the horror of organ transplant surgery and recovery from such, or whether to make Elizabeth’s death as comfortable as possible. How do you ask a teenager if she wants a high probability of years of hospital visits and copious amounts of medicines, with a general feeling of illness the whole while; or the certainty of her life ending? I don’t know. I bet none of us does.
We have decided that the best thing we can do is to love her throughout her years, and figure that out when we come to it.