You probably expected to hear an update sooner than this. I certainly expected to provide one sooner. But who would have thought it would take almost two months to get Jackson's CPAP mask and machine? I'll skip the frustrating details of the delays, mistakes, and miscommunications, and just recap this past week when Jackson finally got the device.
Tuesday: Knowing what was in store, Jackson kept finding reasons to delay bedtime. Around 11:00, Darrell tried to put the mask on Jackson, who began crying hysterically. So Darrell put the mask on himself to show Jackson it was OK, and then Angy did the same. She said the amount of oxygen blasting through it took her breath away. They tried to explain how the mask would help him sleep and make him feel better, but Jackson wasn't having any of it, so Darrell finally had to force the mask on.
While my poor boy lay on the bed shaking, Angy lightly scratched his chest through his T-shirt, and she and Christian sang "Old MacDonald." Jackson calmed down enough to start requesting which animal he wanted them to sing about next, although it was harder than usual to understand him with the mask on. At one point, Jackson faked having to use the restroom just to be able to remove it.
The three of them slept in the same room. Christian kept saying encouraging words to his big brother, even after the lights were off. "You're doing good, Jackie." "It's gonna be OK, Jackie." What a little sweetheart.
During the night, the low hum of the machine turned into a shrill whistle. Darrell searched for answers on the Internet and determined it was from all the drool Jackson was producing that had nowhere to go.
Wednesday: Despite Jackson's repeated pleas of "no mask" during the evening, the mask was forced on again. After everyone was asleep (except night-owl Darrell), the machine started making an awful noise that woke them up. Through another Internet search, Darrell determined the mask apparently wasn't fitted properly.
Thursday: The technician from the medical supply company couldn't come until Friday, so Jackson got his "no mask" wish for one night. It was a peaceful, restful evening in the Davis household. That is, as peaceful and restful as possible with a special-needs 12-year-old, a three-year-old who never stops talking or moving, and a one-year-old who's walking now and trying to keep up with her two brothers.
Friday: The hysterical crying began again when the technician did a semi-fitting, and later Darrell had to make some more adjustments amid more crying. When he was finished, Jackson clapped and smiled, looking very pleased with himself, and then researched CPAP masks on the Internet (wonder where he learned that). Darrell and Angy were hopeful things would go well that night. They were wrong.
After Jackson lay in agony with the mask on and fully awake for a couple of hours, they allowed him to get up. When Jackson finally went to bed at 3:00 in the morning, they were too tired to deal with it, so he got a partial no-mask night.
Saturday: I tried giving Jackson a little pep talk on the phone about the benefits of wearing the mask. Angy said he had a strange look on his face while I was talking. He didn't tell me goodbye, just handed the phone back to Angy. Maybe Jackson feels like we're all against him.
That night wasn't any better. Jackson lay in bed crying with the mask on for a couple of hours. At last he fell asleep for about seven good hours of rest, but it didn't improve his mood. Angy said he's been angry all day.
If my little darlin' understood that the alternative is a permanent tracheotomy, maybe he'd be more receptive to wearing the mask. But for a boy who hasn't ever been able to tolerate so much as a bandaid, that obtrusive, restrictive contraption is a lot to ask.
Only God can make the situation better. I pray that He will.
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