Kirsten is no longer tethered! She has been taken off IVs, had her central line removed, and is no longer wearing compression socks.
Apparently, some of you read too much hope into mentions of Kirsten coming home. First, I do not want her home. She is not ready. She would be unable to get out of bed on her own, prepare meals, or go to the bathroom. She would likewise not be able to drive to the many doctor appointments that will be required. Second, all mentions of her discharge have been only that. There is no order. Her blood sugar, blood pressure, and hemoglobin continue to fluctuate dramatically. Leaving the close proximity of the hospital would be dangerous. Kirsten learned today that she will be going to a rehabilitation hospital when she is medically stable enough to do so. We do not know when that will be.
Kirsten walked down the hall and back today with the aid of a walker and physical therapist. When I visited her at lunch she was sitting in a chair.
Kirsten is no longer on long-acting insulin. We are thrilled to learn that her diabetes should go away quickly as her cortisol levels become stabilized.
Still no results on the EEG and liver biopsy.
Kirsten is taking copious notes about everything that is happening to her and what she is thinking and feeling. I scanned them tonight using my iPhone. Reading through them is both heart-breaking and infuriating. Nurses have laughed about their egregious oversights and at other times she has been denied food and pain medications simply because the nurses or CNAs can’t be bothered. The level of care without me there is dramatically worse.
I had to call the nurse’s station tonight because Kirsten was told it was too late to order dinner. Did they forget she works nights at the hospital? Crazy that when the angry boyfriend calls they are suddenly able to find a menu.
If you, like me, enjoy reading science papers, here’s one that will give you a better idea of what Kirsten will likely experience in the months and years ahead:
Quality of life after laparoscopic bilateral adrenalectomy for Cushing’s disease
Mary T. Hawn, MD, David Cook, MD, Clifford Deveney, MD, and Brett C. Sheppard, MD, Portland, Ore
I stopped by Kirsten’s room this morning on my way into work. She was sitting up in bed writing, and had already ordered her breakfast. Her Foley catheter had been removed (TMI?), and the only IV bag remaining was saline.
I left her a list of questions to ask the doctors. I hope she comes home soon.