Wednesday, June 27, 2007


It's been a month since our 3yo's heart surgery began. Last week, she was able to come home, not so much because she was doing better, but because she was doing worse staying in the hospital. With so many alarms, nurses, doctors (& residents) "messing" with her, wagging needles and probes about, her anxieties hit a threshold and she began to do worse. After we bargained to get her home and recover in the comfort of her home, she started to do well again...until this past weekend.

By Sunday, she had developed a 102° F fever, was overcome with fits of coughing and her Oxygen Saturation levels dropped. We took her in to her pedatrician, who deferred to her to her cardiologist, who had her admitted into the Pediatric Cardiac ICU discharge wing, where she was moved to the full PCICU. This, by the way, is at her former hospital where her former surgeon commands. She tests positive for a bacterial infection somewhere about her chest, and the threat of another open heart surgery looms overhead.

The akwardness of facing her former doctor had been palpable and complicated matters, and with this possibility of another operation, she is being moved yet again to Stanford...where she undergo another battery of testing and whatnot. We feel naueous.

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Sunday, June 17, 2007

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'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.....

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Tuesday, June 05, 2007

The Girl is Alright

Michaela, our 3 year old with a congenital heart defect, had a good heart surgery last week at Stanford. Amazingly, they were able to perform this procedure without putting her on bypass, and without lowering her body/brain temerature to ~16°C!!! This has made an enormous difference on her recovery, which seems to be progressing along swimmingly.

They were, however, suprized to find an infection that had been "simmering away for the last 2½ years", encased within some scar tissue. This was on an abandoned Gore-Tex shunt that joined her right ventricle to her pulmonary artery that was left inside after her second heart surgery. In other words, it had been contaminated by her previous surgeon!!! Had this inflamed and burst it's cocoon, it would surely have been fatal for her, and it could have happened at ANY time.

Of course, there are a number of complications, like having all her IV-sites blown, and a possible temporary or permanant vocal chord paralyzed, and still having oxygen saturations in the 65-70% range, rather than the upper 80's (you and I are at about 100%...give or take). But it is still early in the recovery process and she looks marvelously well. Very little swelling and warm hands/feet for the first time in her life. Here she is after a visit from Grandma.

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