Kirsten Update – April 24, 2013

I’ll just keep updating this post today, as appropriate.

10:27

Kirsten hasn’t yet been transferred to Gibson (Maine Medical Center Cancer Center). Right now she’s sleeping, exhausted and with a persistent headache.

She had another hypertensive crisis episode this morning around 07:00. I was still at home. Like before, the pain onset immediately and was accompanied by a rash on her neck and chest. This time, however, there was more chest pain. The nurse called the doctor, and several people rushed to her aid. Drugs were administered, and a photo of her neck was taken for reference.

Frustratingly, they continue to attempt to give her medications she is no longer required to take. How many cycles of meds have we done since arriving Monday? Why isn’t the computer updated? Obviously, my frustrations are palpable, but it’s a patient safety issue for which they already have a solution. For crying out f**king loud, the nurse is looking at the computer when she’s reviewing the morning meds before giving them. If it’s not updated, it’s useless. Saying that the review with the patient is to prevent accidents is simply not good enough. What if the patient forgets, didn’t understand the instructions, is delirious, etc? I hate that I feel like I have to be here to be the control and safety advocate.

Yesterday, the oncologist told us several of her meds would be redosed or eliminated, at least temporarily, for troubleshooting purposes, yet no change was in the computer, except in her comments. The nurse doesn’t review the comments when giving meds, only the med orders. It’s possible that the order was for the next round, as she said when I asked her later, but that’s different from what we were told yesterday, so now it seems more like a cover your ass type of thing. Ugh!

Anyways, Kirsten is on a twenty-four hour urine collection test to monitor myriad chemical levels. They’re also drawing blood. Hopefully we’ll get some answers soon, but they likely will not come today.

Kirsten was scheduled to work tonight. I took the elevator to R9 and talked to her boss, who was very concerned and sweet. She put Kirsten on two weeks leave.

Yesterday the x-ray of her spine revealed a second fracture on the T-12 vertebrae. This is in addition to the overall compression of her spine, with many compression fractures. She has shrunk more than three inches in height recently, which is concerning. Nothing can be done, except to continue her daily Forteo injections, and possibly do some physical therapy to strengthen the supporting back muscles. The prognosis isn’t good, but it’s not a primary concern at this time.

10:41

An oncologist just came in and asked a few questions, mostly about the Tamodar (chemo pills). They seem to be leaning toward tumors releasing chemicals due to being shrunken by the chemo. Nothing definitive, and I have my doubts (Dr. Kulke, our oncologist at Dana-Farber Cancer Institute, said he thinks it’s not the chemo.) So we continue to wait.

14:45

We’ve moved to the Cancer Center, which is very nice! I have a small table next to an electrical outlet, so I’m all set. I can watch airplanes transitioning at the Jetport (and listen to them on LiveATC.net), and catch the Portland Seadogs game tonight. And, if Jesus really loves me, he’ll send me a helicopter (possibly the most selfish prayer EVER!). The only downside is that I have to stare at Amato’s store down below, and think about piping hot ziti with meatballs. The hospital cafeteria food is disgusting.

I spoke with a doctor who showed up at my request to discuss the medicine situation. I asked why Kirsten was being put on Levetiracetam, and was told it’s because she takes it as an outpatient, which isn’t true. She titrated off it for months after being released from New England Rehabilitation Hospital, and should have never taken it in the first place. When I asked why it’s still in the computer Wednesday, when we arrived Monday, the reply was dismissively that it was simply that way in the charts. When I asked why the new endocrine doses weren’t put in the med orders, I was told that the night shift added it in the comments, but not the orders. When patients risk suffering because of gross negligence, it’s not satisfactory to say that employees are having difficulty learning the new computer system or that things fall through the cracks at shift change. The systemic failures are extremely frustrating, for which the poor resident with whom I was speaking was experiencing full force. Not only might we risk having to go through months of titration again (we wouldn’t), but adding another drug to the already complex regiment at a time when they are monitoring her closely, is simply turning too many dials and could complicate diagnosis. It’s just stupid, and inexcusable.

Kirsten's morning medicines caused much confusion and frustration
Kirsten’s morning medicines caused much confusion and frustration

Kirsten is doing miserable. Her head hurts a lot, and she’s pretty sedated. She’s very anxious about having another hypertensive crisis episode, as the pain is indescribably severe.

She ordered a lobster roll and blueberry pie, which she said after it was delivered that she had selected because she wasn’t hungry and thought I might like it. Yesterday she sneakily ordered me a cheesecake. It’s so endearing the way she takes care of me, even as she is being taken care of. I dig her.

The room at Gibson affords me a great view of the airport, helipad, and Hadlock Field.
The room at Gibson affords me a great view of the airport, helipad, and Hadlock Field.
I hope a helicopter comes in while I'm here
I hope a helicopter comes in while I’m here
Kirsten was happy to be in the cushier digs of Gibson
Kirsten was happy to be in the cushier digs of Gibson

Kirsten just got out of the shower, which is in her new room. The nurses and aid are very attentive, patient, and seem quite competent, which is reassuring.

19:32

Not much to report at this time. Dr. Christine Twining, an endocrinologist, came in to discuss what they’re doing. It’s going to be a while before any of the test results are back, so she didn’t have anything new to tell us. She answered some of my questions, and said that she’s still leaning toward a chemo-related phenomenon, but doing literature reviews (can I have that job?) and consultations with other doctors to try to figure it out.

Kirsten is feeling fine. Persistent low-grade headache, but good besides. Her IV blew out, and RN Leah tried to put in another, without success. Perhaps Kir’s night nurse, Jared, will have better luck.

Larry Burningham stopped by, which was very nice. It’s good to have a friend who understands what it’s like to spend too many days in the hospital with a loved one, advocating for them and worrying. After he left I had a short nap on Kirsten’s bed, while she stood and sat. It’s hard to keep that girl down. :)

Kirsten's nurse, Christine, special ordered some pediatric johnnies.
Kirsten’s nurse, Christine, special ordered some pediatric johnnies.
Brent watching a Lear 45 depart runway one-one at Portland International Jetport, from Maine Medical Center Cancer Center, room 558B.
Brent watching a Lear 45 depart runway one-one at Portland International Jetport, from Maine Medical Center Cancer Center, room 558B.
Kirsten's nurse, Leah, attempts to put in another IV after the one she had blew out.
Kirsten’s nurse, Leah, attempts to put in another IV after the one she had blew out.
Kirsten's room in Gibson has a great view.
Kirsten’s room in Gibson has a great view.

3 Comment

  1. Those are some king-sized frustrations! I hope answers come, and that they get on the ball about the instructions for her meds quickly. Much love.

  2. My thoughts and love continue to go with you today…

  3. We are concerned with you Kirsten and the girls.

    Luv Dad

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