We’re home

Great God Almighty: Free at Last

By Judith

Appropriately, on Martin Luther King Day, we busted out of the hospital with a lot of help and kindnesses.

Zillions of forms and consents for Hospice, transport, etc. etc. Normal SNAFUs: could it all be accomplished quickly on a holiday? the bed changeout promised for between 12 and 4 didn’t arrive until a tense 5:15, her PCA pump delivered to the hospital instead of house, the hospice nurse arriving AFTER transportation, who arrived promptly at 6 pm as promised, and saying “This will take a while to set up…”

The ambulance guys, Greg and Mike, thinking they should leave instead of hanging about for “a while,” Bea, the hospice/hospital coordinator worrying that it could be midnight by the time Kirby was hooked up to her at-home PCA and new transportation arrived (contributing to parental freakout. I had promised K she was going home when she said, a few times, “I want to go home.”)

A scramble for drugs to begin at home (most pharmacies closed. But Bea talked the GWU Hospital into giving (although I am quite sure they didn’t GIVE them to us…) us a day’s supply until we could take three new prescriptions to Grubbs).

But they all miraculously made it work. A dying 28-year old motivating folks?

K folded her arms on her chest like a pharaoh in a sarcophagus and Mike and Greg got her transferred; Christina gave her meds for the road and we were off.

At 810 A Greg wanted to put her in a carry chair because “It would take four strong men to get the gurney up the stairs.”

Robert said, “You guys are two, I’m strong, and I’ll call J— who lives two blocks away.” J— arrived as instantly as two blocks could allow and the gurney was up and in and fitted through the 24” choke point between dining and kitchen.

Whew.

Being home allows us 24/7 contact with her, no bicycle/Metro/car and parking garage transitions. At 4 am last night I heard voices downstairs (R, yet another candidate for Jewish sainthood, who also says firm is his preference, was sleeping on a  mat on the floor next to her bed). I went downstairs and helped with a little middle-of-the-night wardrobe change (Robert offered her three tee shirts and she picked orange). Then put in a load of wash (we’re generating a lot of laundry), hoping the washing machine wasn’t too disturbing for her aunt on the other side of the wall (next morning she, another Jewish saint, said it was ok) and back to bed.

Not possible when she’s in the hospital.

So: we’re settling, Robert’s picking up more drugs, K is drifting, mostly fairly comfortable, and we’ll negotiate for more pain relief.

Tuesday, 17 January, 3:30 pm

The Hospice nurse was here. Baseline pain med is up 40% and “bolus” (that’s what she gets by pushing the button) is almost doubled so we’re hopeful that will help get pain off the misery list.

Just now while the pain is still not well-controlled she says, “No visitors.” This is subject to momentary change so please keep checking.

Good news: her kidneys really seem to be doing better. We’re now hoping for weeks, not hours or days.

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10 Comments (+add yours?)

  1. Cecelia Weinheimer
    Jan 17, 2012 @ 21:47:13

    Judith & Robert – There are more immediate, important uses for your energy, may I assist with that laundry mound? I do pickup, fold and deliver + will certainly use the preferred soap & softener. Cecelia

    Reply

  2. Anna Robinson
    Jan 17, 2012 @ 22:52:50

    Dear Judith and Robert,

    As you probably know, I have been dealing with leukemia, getting into remission and all the after-effects of treatment, for the past 5 years. I have strong connections to the Fred Hutchinson Cancer Research Center; a world class institution, where I was treated here in Seattle. I’m in touch with an ovarian cancer oncologist who would be happy to consult with you if you are interested. Please email me at ar.robinson@gmail.com.

    I am devastated for you both and Kirby.

    Love,
    Anna

    Reply

  3. Abby B
    Jan 17, 2012 @ 23:18:33

    I’m glad you all are home together. Much, much love.
    Abby

    Reply

  4. C
    Jan 17, 2012 @ 23:19:31

    May there always be light in the darkness. I’ll pray for you.

    Reply

  5. Susie Blumenthal
    Jan 17, 2012 @ 23:57:35

    Dear Kirby, Robert and Judith,
    I’ll continue pray for you.

    Reply

  6. Nora P-S
    Jan 18, 2012 @ 00:19:26

    Lots and Lots of love… Also some nerdy science jokes to make all of you laugh…

    What do you call 2,000 mocking birds?
    2 kilo-mocking birds (or to kill a mocking bird)

    A neutron walks into a bar and orders a drink. It asks the bar tender how much it costs… The bar tender says, “For you, no charge”

    Much love, Nora P-S

    Reply

  7. James Soller
    Jan 18, 2012 @ 00:20:40

    Kirby, Judith, Robert, and Owen,

    I am so glad to know that you are all home together. It’s how it should be, and I can’t imagine it any other way. I can’t help but think of the life and joy Kirby constantly brought into my life throughout my childhood, and how my memories of her still do. She is constantly in my thoughts and prayers, as is the entire family. I love your family so much, and it is killing to know that this is happening. It just isn’t fair. If there is anything I can do, please call.

    love,
    j

    Reply

  8. Lauren Ingegneri
    Jan 18, 2012 @ 01:49:00

    I remember first meeting Kirby as a freshman in college–such a positive and cheerful force. Even when we were stressed out with engineering projects, which was more often than not, she always maintained her composure and pushed forward. And she faced challenges with perseverance and laughter.

    When Anna was sick, Kirby spent a great deal of time encouraging us to make cranes and organizing our efforts. We can all learn a lot from her her thoughtfulness.

    I am so sorry that this is happening to you and your family. You are all in my thoughts and prayers.

    -Lauren

    Reply

  9. judi van gorder
    Jan 18, 2012 @ 10:38:03

    I wish I could be there to help out some.What wonderful parents you both have been.I know this has got to be hard on all of you. Love and prayers Judi and Del

    Reply

  10. Nanette
    Jan 21, 2012 @ 01:34:58

    I hope you all feel the love and peace when you read these posts back….years from now. Love n

    Reply

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