Lydia, and her pulse oximeter and portable suction machine and an emergency kit and a small oxygen bottle, came home Tuesday as reported previously on this site. That night we had a couple of mysterious (fortunately very brief, as in <30 seconds) episodes of dramatic oxygen desaturation right after we hooked her up to the ventilator for the night. During these episodes the anxiety level in the home was very high as two people with graduate degrees, plus Charissa, who's in grad school, tried to urgently troubleshoot a home ventilator that had supposedly just been put together and checked out by the home health people earlier that night. (The air was not flowing due to a connection that had not been connected.) Then around oh-dark-thirty after numerous alarms, Winona talked to the helpful on-call nurse and the home health equipment on-call people and learned all about the effects on alarm sensors of condensed water in the air hoses. The next morning Lydia was needing 3-4 L/min of O2 rather than the 0.5-2 L/min she’d needed in the hospital, she looked somewhat lethargic, and her temperature was 101°F.
But long story short, by that evening, and perhaps thanks to a dose of Cipro called in by her pulmonary nurse practitioner, she was back to her usual self and has been fine ever since. At the moment I'm sitting beside Lydia’s crib because Winona needs a break, and Lydia’s asleep breathing 0.5 L/min O2 on the ventilator with 99-100% oxygen saturation. All has been fairly uneventful since Tuesday night. Well, except for the EPA Superfund diaper clean-up yesterday morning—nothing out of the ordinary. (Thank you, Winona, for turning down my halfhearted offer to take care of it!) We are kind of sort of back to normal around here, except for jumping up in the night if anything beeps for more than 2 or 3 seconds. And needing to take a small caravan if we want to take Lydia anywhere. And suctioning yucky stuff from her trachea.
