Wednesday, June 3, 2009

DAY +1: JAILBREAK !!!! - Continued

The
FINAL FLUSH

Nurse Meg administers a saline + heparin solution to flush Susan's PIC line in preparation for her discharge. Susan requested that  her face not appear, but the photographer sneakily cropped in her nose, a distinguishing landmark jutting out from the plane of Susan's physiognomy, to prove that it was she.  The blurriness of the image, the result of a shaky hand, is due to the photographer's apprehension over being caught out in his subterfuge. The masked figure in the background is your faithful blogster, who was not  willing to entrust the reporting of this historic moment to a third party source.

After 6 days, 22 hours, 35 minutes as a registered inmate, Susan was discharged from Brigham and Women's Hospital at 6:25 PM, June 03, 2009.  At 6:45 PM, she arrived at the apartment which is to be home for the next month . At 6:49 she informed her brother: "This furniture needs to be rearranged."  Just in case you were wondering how she's feeling.  We repositioned one of the loveseats, the coffee table, and a chair.  That satisfied her for perhaps two minutes, when she stood up, sized up the rather handsome print over the second loveseat (which, mercifully, remains in place . . . for now) and declared: "That picture is hung too high.  We should lower it."

Highlights of the day: 
  • The word is out. Has been for days. Room 53 on 4C is Party Central. Of course, this morning again there was the usual parade of nurses, nurse's aides, interns and residents on teaching rounds, and the obligatory visit by the Team of Five (the Brigham doctors assigned to Susan's case, in addition to Dr. Soifer, her transplant lead) who offered up their customary fare of sage clucking and hmm-ing to no purpose and then left, leaving us none the wiser (them neither) for their visit.
  • Kristen the Nutritionist spent an hour with us going over the do's and don'ts of Susan's diet to be (it's mostly don'ts).  Some of it Susan can handle just fine, like no fresh uncooked broccoli rabe. In fact, salad bars and buffets are verboten for at least a year. But the prohibition against camembert, feta, gorganzola et al. is going to be difficult to swallow, oops, make that not swallow.  I mean, this is "the Brie Lady" we're talking about. And there's no restaurant food and no takeout. That might work in Peoria, but how's a New Yorker to live? 
  • Then it was AnnMarie the Line Lady's turn.  She's with Coram Healthcare and they are everywhere.  Takeout may be off limits, but Coram delivers, even in Spencertown, NY, in case you need something in a quick infusion, or it's flush time and you're flush out of saline.  Heplocks, PIC lines, and fellow travelers . . . Coram will make sure Susan is always well supplied.
  •  Then Nurse Melissa, whom we had never seen before and never will again, popped in to make the drop, a black canvas tote with a CVS logo filled with drugs.  We knew it was serious when inspection showed among the contents a 28-compartment pill box, in laquered purple: morning, noon, evening, bed columns under the row for the seven days. The courier was gone before we could ask what it was all about, but I think Susan gets to keep the tote.
  • Then Nurse Meg, her of final flusher fame, took her star turn.  Meg took us through specifics of daily life -- what Susan and those she comes in contact with can and can't do -- and the intricacies of the 27 different pills and potions that Susan needs to take daily, being careful to manage for interactions, with/without food, time before/after something else, etc.  Meg also handled all the discharge paperwork and dealt with hiccups like missing meds that hadn't been ordered and now required that a script be written.  Put it all together and the 2:30-ish departure became 6:25.  
So, Susan is out, but not out of the woods. It's no walk in the park (in fact, she's not allowed to go to the park yet). Susan's full-time job for the next several weeks will be to manage her medications.  Tomorrow, its back to Dana Farber for bloodwork, an infusion, a line flush, and a consult with Dr. Soifer.  Then again on Friday, and through the weekend. The daily routine will continue until her neupogen infusion regimen (to stimulate white cell production and rebuilding of the immune system) has been completed. Then it will be 3 days a week to Dana Farber, and after Susan leaves Boston, she'll need to make weekly visits.

Bottom line: Susan is feeling "pretty good" (she authorized that quote).  More tomorrow.

2 comments:

  1. This was such a complete picture of Susan's day, Jerry, for which I am hugely grateful, since I wonder about what is going on several times a day. Nice to know she is somewhere she can re-arrange furniture and that she felt well enough to do some and comment on future picture hanging. Now, THATis really heartening. It must be great to be OUT of the hospital.
    The food business sounds complicated. I guess it means someone there must do the cooking for Susan in the apartment so it is fresh and uncontaminated by any of the things the food could pick up in a restaurant kitchen or on a bicycle on the way to the apartment. Is this responsibility going to be Bob's, Jerry's, rotated?? Or can you get someone to come in and do it?
    Please give Susan my love and tell her I hope that there will be visitors, if allowed, and other happier things between managing meds and going to Dana Farber. Diana

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  2. Susan re-arranging furniture? I'm shocked, shocked to hear she would ever do that! Sounds as though recovery is going very quickly. That's great, Susan.
    Love,
    David

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