The mantra (day 12)

Slow, steady progress. It's a mantra.

Today has been really frustrating for Nancy, she has said so repeatedly. She still can't talk, but she's mouthing words often. She's got more strength in her legs, still barely able to move her hands. And she's holding her head up on occasion. Some parts of the day have been really uncomfortable, with a lot of pain in her back and neck. She's been breathing on her own for nearly the whole day.

We've had a lot of visitors, her niece, brother, father, several friends...I think there were a total of eight. We watched some football, spent time trying to find comfortable positions for her by moving pillows, had some good conversations, got her to smile. At one point, we tried putting a Passy-Muir valve on her tracheostomy so she could talk, but her throat and neck still seems to be too swollen for that to work. Soon it will, and some of the frustration will be gone.

The neurologists are happy with her progress, and repeat that it will be weeks, perhaps many weeks before she has her strength back. Kidney function is about the same, maybe a little better. Oncologists are happy too, as almost all of her GVHD symptoms are gone. Yesterday, the dialysis removed a lot of fluid, so she isn't as puffy today. And the swelling on her neck is going down some each day.

She got really angry with me yesterday, and expressed a lot of frustration...and this is all good. They don't want passive patients in the ICU, she wants to get out of here, and that is really a good thing.

Love,

-tdc

About the ICU (day 11)

Good morning from the hotel :-)

Nancy is sleeping this morning, with little change from yesterday. All vital numbers are good, although she is back on the respirator. Her nurse tells me that her oxygen levels were dropping a bit, and they think all the edema (extra fluid) in her body is creating some congestion around her lungs. So she is getting another few hours of dialysis later today, as they try to help her body get rid of some of the fluid. Otherwise, she looks good, her color is good, and the swelling in her cheek (parotitis) is down a bit. We are still waiting for her kidneys to wake up, although there is a little urine in the bag each hour. She is on three antibiotics, an antiviral, prednisone, IV saline and electrolytes, tachrolimus, hydrocortisone cream, occasional pain medications, and a feeding tube in her nose. Hard to believe she is comfortable, but she says she is fine.

I should tell you a little about the place, this ICU. It's pretty amazing how good the quality of care is. The unit is L-shaped, like one big room with a desk and entrance at the crook of the L. There are 16 rooms, positioned all around the periphery, eight at either end. Outside each room is a computer workstation with a large chart spread in front, at bar height with a roll-around stool, carts and equipment positioned as needed. So it's very easy for any individual or piece of equipment to get to any of the beds in a few seconds, and all of Nancy's data, days of history are right there for everyone to access.

Nurses work 12-1/2 hour shifts, with a half-hour overlap for briefing, and are responsible for one patient for their entire shift. They have ALL been excellent: sharp, knowledgeable, they know what is going on, why, welcome my observations and questions, treat us both with kindness and compassion. The ICU doctors are similarly on top of things, and the entire staff seems to work together really well. Some commute from places like Sacramento or Modesto. They all seem to be in the 30-50 age range, and like being able to focus completely on one patient for their shift. Almost every other kind of unit in the hospital assigns nurses to multiple patients, as you would expect.

It's intense. The patients who come here are critical, so there are alarms going off, little storms of activity when something serious happens. I don't think they've lost a patient while I've been here, but I'm sure it happens regularly. The forces of Vishnu and Shiva are very present, as some actions are completely about preservation, and some require penetration, some form of destruction to create life. I could never put a catheter into someone's neck, suction phlegm out of a tube deep in their chest when they are struggling to breathe. Or perhaps I could, I'm just doing what I have to do every day we are here, and if I had to take uncomfortable action to save a life, I imagine I would rise in the moment.

Those of you who have done voice dialog or "parts work", read Hal & Sidra Stone's books, will appreciate the splits I sit in every day. This is a place that demands solid interior relationships...by this, I mean that I have to negotiate and manage the parts of myself every time I step in. Child voices are in safe places, except for the one that looks upon the miracles in wonder. My fear of losing Nancy is ever present, so we bring him along with clear understanding that he does not get to run the show while I am in the ICU. The medical dude inside has grown quickly, can assess the monitors, IV pumps and respirator and urine bag in a few seconds while looking Nancy's pallor and breathing. I'm surprised at how grounded and calm this part of me is, and can feel the pull to be that, to be a nurse or a doctor. He is the one who runs the show most of the time right now, and he is good with the staff, putting them at ease, respecting them, doing what he can to make everyone as effective around me as possible. There is the reiki initiate, who helps manage the energy in the room, brings healing energy to Nancy, calls on resources I scarcely understand.

And then there just me, personal and feeling, loving Nancy, wondering what kind of relationship we will have as she recovers. I long for my partner, and reach for the patience and capacity to hold all of this in the coming weeks and months.

* * * *

Little gifts continue to delight. My engineering group at work sent flowers yesterday, so I came home at midnight to a lovely vase of roses and a note by the front door. Another friend made a rice bag compress for Nancy, that can be heated in a microwave and used to relieve aches and pains...and I cannot bring it into the ICU, because it's not sterile, dammit.

Nancy had a few friends and family visiting yesterday, and visitors are fine in ones and twos. She is in Moffitt Hospital 9ICU (505 Parnassus, on the 9th floor). 8am to 7pm are the best visiting hours. Come if you would like to be with her, talk to her, read to her. Hopefully her breathing equipment will be changed soon so she can converse, but right now, she's communicating mostly with her eyes, with nods and shakes of her head, with a squeeze of her hand. If you want to give me a call first, my cell number is 415 272-3565.

Love,

-tdc

Slow steady progress (day 10)

Slow steady progress. All the vital things, pulse, breathing, blood pressure, are great. No more cardiac monitor alarms, thank god. She is still fully awake and present and spirited. For example, she didn't want me to go home last night, and I finally just had to push back so I could get some sleep. She is still comfortable, not in any pain, and spent the night listening to Mozart on her iPhone.

Today Nancy is off the continuous dialysis, getting regular dialysis once every day or two instead. This is progress, as continuous dialysis is something they only do for really critical patients. Her kidneys are starting to work again, although they aren't anywhere close to normal operation. The surgical drains have been removed, and neither operation seems to have any complications Later today or tomorrow, her breathing equipment will be switched so she can talk; right now, the tracheostomy tube is just letting her breathe, and it needs some kind of valve in order for her to talk. I think all of this indicates she is beating the infection, but she is still retaining a ton of fluid, and I think full kidney operation will be a big milestone.

The neurologists keep checking her, and she doesn't have the strength yet to raise her arms or legs, or fully open her hands. Since both abscesses were on the spinal cord, they tell me that it may take her months to fully regain her strength. There is a lot of physical therapy in her future. She also has about six weeks of IV antibiotics ahead, although she may not need to stay in the hospital for all of that.

I'm at work now, for the first time in a week, and will be back to visit this evening. I've gotten some remarkable, lovely emails from some of you (there are about 115 people on this list!) and one friend sent a Jewish care package, chicken soup and challah were on my doorstep when I got home last night. We both feel loved and well-supported.

Love,

-tdc

Fully awake and present (day 9)

Everyone,

Good news, Nancy is improving today! She is fully awake and present, saying things like "I love you" and "thank you" to me and her doctors. She can't talk yet, because of the tracheostomy, but she is trying to communicate. We're getting an alphabet board, so I can figure out what she wants to say.

Her strength is better, she can move her fingers and toes and arms and legs better. She is breathing on her own since about 9am. Also, her kidneys seem to be coming back, and she's starting to make urine again.

There is a gland in her neck that has gotten infected on one side, making her look like a chipmunk, but the doctors are not particularly worried about it.

She's not out of the woods yet, but her odds are a lot better. I can't tell you how relieved I feel. There are a bunch of doctors who've come by to check her out, her neurosurgeons, kidney specialist, the ICU docs, and they are all smiling. We've been looking into each other's eyes and smiling a lot, and I feel all goofy with relief. I'm reading your emails to her, and have been telling her all that has been happening to her. Her memory of the last few days seems pretty hazy, which is probably just as well.

Keep the "cards and letters" coming, and I'll read them to her. Love,

-tdc

Out of surgery (end of day 8)

Good evening, everyone.

Nancy came back from surgery about an hour ago, and is resting in the ICU. The five-hour surgery went well, the neurosurgen Dr. Mummaneni said he's done everything he can do. The second abscess is drained, so now it's all up to her immune system and the antibiotics. She now has an incision and drain on her neck as well as the middle of her back, and has a tracheostomy, a breathing tube inserted through her neck, so she doesn't have it going down her throat any more. That has got to be a lot more comfortable.

She is clearly pretty exhausted by all this, only responding with weak nods when I ask her questions. She is not saying anything yet, although she should be strong enough to talk soon. She wanted to be warmer, so we have the warming blanket back on her, and she seemed glad to see Jim and Kathy (her brother and sister-in-law) and Cindy and Trish, close friends from high-school days. Now I'm staying with her for a while, before I go home to cats, a little dinner, and some much-needed sleep.

Nancy wanted me to talk to her, so I've read her some of the notes you have been sending today. We both appreciate all your wishes and support.

I'll be back with an update in the morning.

Love,

-tdc

Neck surgery (day 8)

Hello, from the ICU...

Nancy just left for her second surgery, and will be in the operating room for three or four hours. This should be the last operation, and will drain her second spinal abscess, located at her C2 vertebra.

She was groggy this morning, but not in pain, not needing anything. I told her how much we all love her, relaying messages from her brother, sister, niece, and some close friends. All her vitals were fine all morning. The echocardiogram did not show any signs of infection in her heart valves, which is very good news. There were signs of some small abscesses in her heart muscle, but those should clear up along with the infection if and when her antibiotics start winning the war.

Our hope of course is that draining the abscess will push her over the edge toward recovery. We are looking for her blood pressure to climb, for her to be breathing well on her own, and ultimately, for her kidneys to start working again. But I want to be honest, her recovery is very much a 50/50 proposition according to her doctors.

So I'm praying for a perfect, effective surgery with no complications, for her safe return from the OR in about four hours, for her complete recovery. Prayer is starting to feel like an overused word for me -- is that all I can do? I've been able to bring reiki, to remind her that I love her, I choose her, I need her and want her recovery. And then there are the higher powers, the deep mysteries, the archetypal healers with ancient knowledge...I ask their attention, their assistance, their loving kindness to bring Nancy through all of this. Her spirit is great, and so is the challenge. We all ask their help.

Love,

-tdc

Awake and responsive (day 7)

Nancy is off the anesthetics today, so she is awake and can nod yes and no. So I've been reading some of your lovely emails to her, and bringing her up to date on the day and time, and what has been happening to her. She didn't know she'd had surgery, and doesn't really remember much of the last few days, as far as I can tell. This is the first time in three days that she's been able to look me in the eye and I can see her.

She's not in any pain, although she still has bursts of atrial fibrillation, so she is getting pain meds. She still has the breathing tube, the dialysis catheter, the feeding tube, the foley catheter...and her kidneys are still out of action.

Now the neurosurgeons are looking at the second abscess, at vertebra C2 right under her skull. We may have more surgery tomorrow to drain this last abscess. I should know more later today.

By the way, I've gotten a dozen to forty responses to each of my emails, so it's been hard to reply to everyone. I do read them all, and really appreciate all your offers of support. I'll call as I think of things that would help.

love,

-tdc