Three makes a trend, right? Well, in that case, we're definitely on trend toward recovery with B. Because after months of alternating Good Days and Bad Days, we're on the sixth consecutive Good Day.
Her initial transition into the specialized RSD rehab program was a rough one, and her first several days there were marked by a return to the frustration, despair, and fear that we'd seen in her when she was first admitted to the hospital back in early January. But after a total meltdown last Monday, she turned a corner—psychologically and emotionally, at least. She is not just fully cooperating with her physical therapists, but asking for more—and more difficult—exercises to do. Her attitude has done a complete 180, going from "I can't" or "I guess maybe I'll try, but..." to "I will!" and "Watch what I can do!" Her independence is growing day by day, as is her positivity.
So we're feeling pretty darn good about B right now, in the way she seems to have matured and in the determination to get better that she's now showing us. Our biggest challenge at this point is making sure that her new gung-ho attitude doesn't get squashed or squandered. Which may be tough, considering all the logistical, bureaucratic, red-tapey problems coming at us from all sides. We've got the insurance issue—hoping they will not only agree to continue funding B's rehab, but also increase the meager number of therapy hours that they've granted her so far. And there's also the hospital-stay-related issues—both the typical (like the bad food) and not-so-typical (like the 13-month old roommate B was saddled with this weekend). Off to do battle.
Monday, January 27, 2014
Saturday, January 11, 2014
It has been over a week since B was hospitalized. A lot has happened, but forgive me for giving you all the Cliffs Notes version—I'm writing this in one of the few waking hours I spend at my own house these days.
Two Thursdays ago, when things were at what we hope were their worst —B couldn't stand or even sit upright, had only one usable limb (her right arm), was in constant pain, and was falling into terrifying, screaming, panic attacks—we somehow loaded her into a car and took her for evaluation at one of the country's few intensive inpatient RSD rehabilitation programs. We were promptly told that she was not healthy enough to attend. That was pretty much the emotional low point for us as parents.
But there was no way we were just dragging her back home again to a house in which we non-professionals were utterly unequipped to help her. We went straight to the emergency room at the affiliated children's hospital and were admitted almost the moment the ER docs saw B.
The past week has been a grueling one for all of us—Noelle and I shifting back and forth between home and hospital—during which B has gotten meds that seem to have actually helped a bit, engaged in some tough (but far too infrequent) physical and occupational therapy, and eaten a lot of horrible pureed foods (because her teeth hurt too much to chew). The spasms still come at night, which when coupled with the constant loudspeaker announcements, fire alarms tests, and random pop-in vitals checks, make a truly peaceful sleep impossible. And we've run into more logistical frustrations than I care to count.
But progress has been made, too. Every PT session gets just a little bit better. At the last one, B stood up and bore her own weight for 10 seconds—something she hadn't done since before Christmas. And perhaps more impressively, she didn't yell at the therapists during the entire session. The biggest improvement, however, has been in her mood. She entered the hospital in complete despair, and spent the first three days there muttering things like, "I'm never going to leave this bed; this is my life now." But she's been having some good days. She's talking about the future again—how she can't wait to go see Wicked when she gets healthy, and how she wants to finish her Model UN project before the group's big NY conference in March. Cards and well-wishes—from friends and celebrities alike—have done a lot in that regard. Thanks to everyone who has been a part of our humblingly vast moral support brigade.
At this point, we are both hopeful and very wary. B was finally accepted into that same inpatient rehab program that first said no to us (her week in the hospital has stabilized her and she has since been deemed an appropriate candidate) and will be able to begin as soon as a bed is free. But our insurance will only cover such programs if they prove to be working. So we worry that a slow start over there or a few bad days for B might set us back to square one. Fingers crossed.
Two Thursdays ago, when things were at what we hope were their worst —B couldn't stand or even sit upright, had only one usable limb (her right arm), was in constant pain, and was falling into terrifying, screaming, panic attacks—we somehow loaded her into a car and took her for evaluation at one of the country's few intensive inpatient RSD rehabilitation programs. We were promptly told that she was not healthy enough to attend. That was pretty much the emotional low point for us as parents.
But there was no way we were just dragging her back home again to a house in which we non-professionals were utterly unequipped to help her. We went straight to the emergency room at the affiliated children's hospital and were admitted almost the moment the ER docs saw B.
The past week has been a grueling one for all of us—Noelle and I shifting back and forth between home and hospital—during which B has gotten meds that seem to have actually helped a bit, engaged in some tough (but far too infrequent) physical and occupational therapy, and eaten a lot of horrible pureed foods (because her teeth hurt too much to chew). The spasms still come at night, which when coupled with the constant loudspeaker announcements, fire alarms tests, and random pop-in vitals checks, make a truly peaceful sleep impossible. And we've run into more logistical frustrations than I care to count.
But progress has been made, too. Every PT session gets just a little bit better. At the last one, B stood up and bore her own weight for 10 seconds—something she hadn't done since before Christmas. And perhaps more impressively, she didn't yell at the therapists during the entire session. The biggest improvement, however, has been in her mood. She entered the hospital in complete despair, and spent the first three days there muttering things like, "I'm never going to leave this bed; this is my life now." But she's been having some good days. She's talking about the future again—how she can't wait to go see Wicked when she gets healthy, and how she wants to finish her Model UN project before the group's big NY conference in March. Cards and well-wishes—from friends and celebrities alike—have done a lot in that regard. Thanks to everyone who has been a part of our humblingly vast moral support brigade.At this point, we are both hopeful and very wary. B was finally accepted into that same inpatient rehab program that first said no to us (her week in the hospital has stabilized her and she has since been deemed an appropriate candidate) and will be able to begin as soon as a bed is free. But our insurance will only cover such programs if they prove to be working. So we worry that a slow start over there or a few bad days for B might set us back to square one. Fingers crossed.
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