Camping a l'Hôpital
Michaela (our 3 year old with HLHS) is still in the hospital (3 weeks now). Since my last posting, she has bounced back to ICU 2 more times and the stay has not been jolly. It has been decided that she has Paradoxical Vocal Cord Dysfunction. The paradox is that there is no physiological reason for her to have difficulty breathing or swallowing, however a serious problem persists such that her Oxygen Saturations drop to about 40% and her heart rate climbs to 160 bpm.
Basically, this is a psychosomatic condition that is induced by stress, anxiety or aggitation. While some people clench or grind their teeth involuntarily due to stress, she closes off her vocal cords thereby restricting the flow of air into her lungs. The Ears/Nose/Throat Docs wanted to either permanantly paralyze a vocal cord or leave her with a Tracheostomy to overcome this problem, thinking psychotherapy ineffective for her now. Our answer was "absolutley not". First, neither "fix" the problem, and second, both are fraught with major risks of their own and severely reduce her quality-of-life (no voice, lifelong feeding by tube...)
Our goal was for her to get out of the hospital environment ASAP (thereby eliminating the major source of stress) and go from there; Yoga for Kids, and the like. Well, all this has been the brief description of the saga here, but I'm sure you can understand that it has not been easy. Ironically, however, the heart surgery portion of this stay has been great...it's just this "other" stuff that has come up in the meantime to make this a miserable experience. How much of home repair is like this, I ponder.....