It’s Friday night and we’re back in the ER…again

by Judith M. Capen

Friday the 13th saw us in the infusion center getting Avastin (possibly good news) after a night in the GWU hospital getting two units of blood.

(“Should take about four hours, but gotta go over there and check in.” So Kirb and Judith walked from the MFA and a chemo to the hospital, went through the usual interminable checking in/admissions process, ATTEMPTED (unsuccessfully as it turned out) to get her MFA doctor of ten years ago taken out of the system as “referring,” also attempted to get the home phone number corrected) and were in a room by a little after 7. She was in a vomiting phase (about 18 times in the previous 24 hours) but was still feeling the chemo boost so ordered spaghetti and meatballs, veg soup, ice cream, lemonade, (v. bad) and zucchini. She ate the ice cream, some of the soup, and eventually, with more vomiting some of the spaghetti. Maybe just a meatball. Robert, earning again the “best dad” award, spent the night in the hospital with her as they transfused her and checked vital signs every 15 minutes. Add vomiting and it wasn’t a restful night. But Robert got to eat the rest of the meatballs.)

Friday am, moving very very slowly, Robert wheeled her back the block to MFA and the Avastin and news that her blood work of the previous day looked v. bad for kidney function moving replacing the 3-month old stents up on the to-do list so Robert and Kirby made their way up to cardiology for the EKG needed as a prerequisite for that “procedure.” Judith, who had kept the appointment with the WHS Dream Team (palliative care) met Kirby and Robert at MFA cardiology.

EKG really did only take a few minutes but afterwards peeing in a cup proved too much and K passed out (maybe a vasovagal syncopy because her blood pressure was low, still not enough red blood cells to transport enough oxygen, who knows? Combine general “could be this or could be that” with my medical ignorance…)

So K and Judith took a one block ambulance ride with two lovely young EMT guys from the fire station right across the street from her (and Owen’s) high school, the curiously named School Without Walls.

In the Emergency Room we, for the first time, responded to the attempt of a resident to get the story (and he was only the second one in the hospital, although it was told to the EMT guys and folks at MFA) with a “Give us a break. We’re not gonna go through it all again. Let’s go straight to pain control.”

Sidebar: since major pain has now bedeviled K for 4 ½ months all three of us tend to focus on that. It’s probably a mistake in Emergency Rooms since asking for pain relief makes us look like dope addicts and the docs DO NOT like pts suggesting pain meds or dosages. But this time we had a sackful of her meds and permission from the palliative care meeting so we continued with some down low continuation of her normal pain regimen while also asking for iv pain relief. By the time Judith left about 1 am progress had been made: from 15 on the 10 point pain scale to about 8.

Forgot to mention that a new pain in her left shoulder appeared in the wee wee hours of Friday morning, which had managed to eclipse the long term abdominal pain. Vomiting had tapered off to small quantities at greater intervals.

Then the Emergency Room docs told us that in spite of her 2 units of blood the night before she needed another 2 and the scan showed some kidney enlargement so why not go ahead and replace the stents Saturday morning after 2 more units of blood. (Once into her new room Robert got assertive with the nurses: “Let’s get the PCA and pain relief going THEN do the interview and listen to her lungs…” Her parents are becoming the nightmare pt advocates, apologies to all the nurses and drs. among friends and family. We feel like having been there/done that as much as we have in the last 4 ½ months we’ve lost patience with the multiple story telling, the interminable checking of vitals, none of which have made a whit of difference to her !@#$%^&*() tumors.)

Thus we survived Friday the 13th.

Two units of blood overnight, stent replacement in the morning, decent pain control with a PCA and it is now 3:30 and she is catching up on some of the sleep she missed the previous two nights. And now looking forward to 2 more units of blood.

Stay tuned.

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11 Comments (+add yours?)

  1. Elana
    Jan 15, 2012 @ 02:59:31

    What an awful night. I am thinking of Kirby (and you and Robert and Owen) constantly. Lots and lots of love….

    Reply

    • catherine taylor
      Jan 15, 2012 @ 05:06:43

      There are no words. I am remembering the scene in Terms of Endearment where Shirley MacLaine goes berserk in the nurses’ bay trying to get her daughter pain meds. I am remembering sitting by my mother’s side pressing the morphine button frantically. I am next to you, over you, around you with my love, prayers and understanding. I am screaming for you and with you. I love Kirby — she knows it, but when there’s a moment, please whisper a reminder.

      JudithStrong and RobertStrong and OwenStrong — praying for you that the Good Lord steels you for this. Hugs from Catherine

      Reply

  2. colleenteresa
    Jan 15, 2012 @ 03:26:15

    Dear Amazing Kirby, Robert & Judith (and Owen), What astonishing fighters you are! Yes, we’re praying, rooting and cheering you on at every step. And dealing with the brainless medical bureaucracy too. It makes us love you all the more; I wish I could be there to bolster you up. Keeping Kirby as comfortable as possible during this ordeal is *always* the right thing to do. And don’t worry if you get dirty looks from medical folk. You are in charge not them! Feel all that love and support around you every minute of every day.
    Love,
    Colleen Fay

    Reply

  3. Eva Jacob
    Jan 15, 2012 @ 04:27:18

    At least you know that all of us who read and re-read your posts are hovering around you in cyberspace, wishing we could do more than pray and send you our love and endless good wishes. . .

    Reply

  4. Jan Greenberg
    Jan 15, 2012 @ 04:28:05

    Oh my… what an incredible ordeal. I am pulling for Kirby (and you and Robert, too). Sending love and prayers your way. Stay strong…
    Jan

    Reply

  5. Olya
    Jan 15, 2012 @ 04:53:03

    praying… and praying…and sending my hopes and love….

    Reply

  6. deborah dorazi
    Jan 15, 2012 @ 16:50:07

    I am totally there with you in demanding that your beloved daughter be given pain meds that work- immediately! Crying and wailing loudly as your child’s Mother and Father advocating for what she has to have is indeed something the two you you strong focused people do well. Give that medical system and it’s members Hell.
    I really believe that “the squeaky wheel gets the grease” .
    I send love and strength everyday to all of you.
    Love, Deborah

    Reply

  7. judi van gorder
    Jan 15, 2012 @ 20:50:10

    Love and prayers to you all. I know this is a difficult time. Wish I could come and help out a little.

    Reply

  8. Ilona Klein
    Jan 15, 2012 @ 23:57:45

    Generations of the Capen-Weinstein-Weinstock families are with you, holding you close. Feel our collective presence and know how much you are loved. Will see you on Saturday at about 1:00 p.m.

    Love, Ilona

    Reply

  9. Kim Franklin
    Jan 16, 2012 @ 14:53:16

    Praying harder and harder everday! Let us know if you need a break as I would gladly take as many shifts necessary. Hoping Kirby has a better week this week.

    Kim, John & Izzy

    Reply

  10. Ruth Capen Batten
    Jan 16, 2012 @ 20:36:05

    Hugs and prayers….I wish I could help.

    Love,
    Ruth Ann

    Reply

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