A big day (end of day 6)

Everyone,

All is fine so far, as Nancy continues to rest and show perfect vital signs.

Pulse 86 BP 111/63, SPO2 96% temp 36.3

The ICU team has decided to leave her sedated for the night, with the breathing tube in. She's had a big day, as her doc said, and letting her rest and recoup is a good thing. She is back on dialysis, under a warming blanket, sleeping on propofol, her surgical drains look good. Now we look for and pray for steady progress.

I realize I've had a big day too. I'm wiped, and going home to sleep early. I'll send another update tomorrow morning.

Love,

-tdc

It went fine

Nancy is out of surgery. The surgeon just called me to let me know that it went fine.

They did a full laminectomy on two vertebrae, and a partial on the third, in order to access and drain the full abscess. She is coming back to the ICU in about 20 minutes, so I will get to see her shortly. I'll send another update this evening.

Thank you all for your notes, your encouragement, prayers, all kinds of support. You and your help mean a lot to both of us.

Love,

-tdc

Into surgery

Friends, here we go. Nancy will be in surgery from about 2:30 to 4:30 this afternoon. They are doing a partial thoracic laminectomy, removing some bone from three of her vertebrae so that they can drain her epidural abscess. This will relieve pressure on her spinal cord, remove a major source of pain, and make it easier for the septic infection to clear from her body.

I hope and pray that this marks the turning point in her recovery, and that she gets better from here on out, over the next couple of weeks. I will send an update when they call me after surgery.

Love,

-tdc

Awaiting a decision (day 6)

Good morning everyone.

Things are pretty quiet at the moment, as we await the final decision on surgery in an hour or two. Nancy is sedated, with good vitals. I had a good seven hours of sleep.

Pulse 96 BP 80/54 SPO2 96% temp 36.9. I tell you this to remind you, this is ICU, Nancy is critically ill.

The medical team continues to waver a little about surgery, with the infectious disease and heme-oncology docs in favor, and the neurosurgery guys reluctant. It's interesting and aggravating to see how specialization makes it harder to make a decision. I won't bore you with the details, but the bottom line is, Nancy is dealing with a septic infection, abscesses around her spine, and they will have to be drained sooner or later.

Every couple of hours, the neuro guys take her off anesthesia, check her neuro function (can she move her hands and feet?), and she starts experiencing visible pain, going into cardiac arrhythmias. This has been going on for three days, and it's excruciating for me to watch. Then the nurse gets the propofol going again to put her back to sleep, I give her Reiki, and within 20 minutes, she settles back into a normal sinus heartbeat.

This morning, she was awake enough for the neuro exam to open both her eyes, and nod yes/no when the nurse asked questions. This is a good sign, it's the first time she's done that since Saturday morning.

I got to talk with Babbas (Dr. Andreadis) her main heme-oncology doc, and he agrees that the abscesses have to be drained. We also agree that her GVHD symptoms continue to improve, her skin is clearing, not that this is a critical issue right now. I also talked with the ID doc, one of the neurosurgeons, a 4th year med student from New York who has been following her progress. It's a good solid team.

I'll send an update when we know about surgery, probably in a few hours. Pulse 95 BP 86/56 SPO2 96% temp 37.0.

Love,

-tdc

Surgery tomorrow

I've got a significant update. It looks like Nancy is going to have surgery tomorrow after all. 90% chance, as of right now. The operation is called a thoracic posterior laminectomy. They will be draining the big abscess in the middle of her back.

After all the careful explaining by the neurosurgeon today, about why they don't want to operate, the team changed it's mind this afternoon. The key factors seem to be:

The abscess is causing Nancy a tremendous amount of pain in her back, perhaps impacting the feeling in her legs, requiring a lot of pain meds and anesthetics

Nancy is not responding to the antibiotics yet, and the ID (infectious disease) doctors feel that the infection will not start to resolve until the major abscess in her mid-back is drained. They also do not think the abscess will resolve itself without being drained.

The risk of infection for this operation is actually pretty low, they do not have to leave any metal in her (inviting infection) or fuse anything, and she's full of antibiotics already.

So surgery will probably happen tomorrow afternoon, but the timing will depend on other surgeries in the morning. It will take about two hours in the operating room. The recovery shouldn't make her infection treatment or stay in the hospital any more difficult. The surgery shouldn't have any long-term effects on her either.

My gut sense is that they are right, that the abscess has to be drained. It's like an intrusion into her body, and those of us who know her well also know how she reacts to intrusions :-)

I plan to work tomorrow morning, then spend the afternoon and evening here during the operation and her recovery from anesthesia. I'll send more updates tomorrow. In the mean time, she is resting comfortably (as comfortable as she can be with a breathing tube, etc.) and has great vital signs. Her temp is down without any tylenol.

Pulse 73 BP 107/56 SPO2 98% temp 36.1. No cardiac alarms for hours. Time for the nursing staff change, and I can't come back until 8:30, so I'm heading home.

I love you all,

-tdc

A lot less scared (day 5)

Everyone,

I started this update one way, as things were not going well this morning. But now I would have to say that Nancy is stable, and I'm settling in for a long wait. She is not going to recover quickly. What we are looking for is slow improvements. This morning was difficult, her heartbeat and blood pressure were all over the map, irregular beat, what is called superventricular tachycardia, or SVT. Her new catheter was apparently contacting one of her atria (heart chambers), and causing some of the problems.

Nancy is going to be on IV antibiotics for at least 8 weeks. We are going to be in the hospital for a while. And they are avoiding surgery if at all possible, because she should be able to eventually clear the abscesses on the antibiotic program. This is complicated, so I'll describe the issues after I give you the update.

Pulse 90 BP 88/51 SPO2 98% temp 36.3

Low blood pressure, basically because she is sedated with propofol, her blood chemistry is off and she's retaining 15 lbs of fluid. So continuous dialysis was started this morning using her new catheter, and her blood chemistries should steadily improve. All the fluid retention is due to her septic infection, so some of that may go down on dialysis too, or maybe not. But at least she should not get any worse.

Acetominophen (tylenol) is controlling her temperature. It's also possible that the antibiotic is starting to have an effect, but it's too early to tell. Her prednisone dose was reduced to 70mg/day today. Her GVHD continues to look better. She is sedated, so she is breathing comfortably, not in any apparent pain, and all her numbers are nice and steady. She is only making a little urine, so her kidneys are still mostly shut down.

* * * *

The bigger question is, will she have to undergo surgery to relieve the spinal abscess? I now have a clear understanding of how they are approaching this. The problem is that she has two epidural abscesses, one mid-back (T12 to L2) and one right under her skull at C2. Here are the pieces.

• the thoracic (mid-back) abscess is long and slender, and pressing on her spinal cord on the left side.
  
• it could hurt nerve conduction to her legs, so they are checking her nerve response in her legs frequently
  
• it can be operated on with a long incision if necessary, but there is a high risk of bleeding because of the location. There is also a risk of infection, because Nancy is on prednisone.
  
• the cervical abscess is around on the front side of her spinal cord, and is not pressing on it.
  
• it can only be operated on from the front, by going through her mouth and the back of her throat. Not recommended.
  
• the antibiotics will clear the abscesses over time
  
• her infection will not be reduced by clearing one abscess surgically, they would both have to be operated on, in two separate challenging procedures.

They are only going to operate on the thoracic abscess if it is impacting feeling and motion in her legs. In the mean time, we want slow, steady improvement, better blood numbers, and eventually, her kidneys to reactive and start eliminating all the excess fluid.

* * * *

So we wait. I will send updates each day as long as it's helpful, more often if something else happens.

Thank you all so much for your emails, FB comments, offers of support. We both appreciate it so deeply. I'm doing pretty well, getting my seven hours of sleep each night, taking care of household stuff and getting food. In fact, I'm going to grab lunch.

I feel a lot less scared today than I did yesterday.

Love,

-tdc

Update on the vigil

Nancy is doing a bit better. Her pain is medicated, she has stopped having the tachycardia episodes, and her vitals are all stable.

Her temp is up to 38.8, like 102°F. After taking her off the pain meds for a bit, she showed better neural response in her legs and hands. And she's making a bit more urine, so her kidney's aren't shut down. They are tossing me out for a while as they install a catheter in her neck, which will let them do dialysis if she doesn't start cranking out more urine.

So I'm packing it up and going home. The staff are great, on top of everything, and the nurse is going to give me a call before midnight with an update.

Love and faith,

-tdc

The ICU vigil

I feel adrift in space and time, my reality is Nancy and a room full of sensors. Read this at your own risk, only if you want to enter the raw reality of today.

Pulse 123 BP 165/88 SPO2 97% Temp 37.9.

This is not going in the right direction so far. Nancy has stopped making urine, and they are expecting to put in a catheter and put her on dialysis. Yes, this is the kind of thing that happens when someone has a bad septic infection. No, not what I was hoping to report. She also gets distressed with the breathing tube in -- that's got to be very uncomfortable -- so they are giving her a fentanyl drip for pain. She can barely respond when we ask her to move her fingers and toes. Once in a while, she has a few seconds of tachycardia, and she's retaining about 15 lbs of water, which has got to be putting stress on her heart.

Just had one. Pulse 150 BP 190/95. Ah, now it's back to 123, and 168/87.

For someone as literal and mental as i am, this is really hard. I take data way too seriously. I sit in this sea of numbers and graphs, fighting back my tears. One of my friends just sent a note with some great comments about prednisone and helplessness in the face of modern medical magic. I feel helpless, a witness to Nancy's struggle, so aware of both her and her data.

Pulse 125 BP 174/89 SPO2 97% Temp 38.0

Her temperature is edging up. Oh hell, there's another EKG alarm. The nurse comes in and says to the machine, "She's not having any PVCs!" Apparently, the machine is smart enough to detect some kinds of heart malfunctions, but it's not perfect. Anyway, we're concerned about her temperature too. It was 37.6 when I got here this morning.

EKG alarm. Pulse 196 BP 163/82. Looks like a v-tach pattern. There, it's stopped, pulse 126 BP 186/94. God, I'm swimming in new terminology, and my restless brain sucks it up. Sinusoidal tachycardia. Renal this, hepatic that, lactate, Continuous dialysis. Fentanyl, propofol, oxycodone.

The renal doc comes in, and tests her neuro functions. "Nancy, can you squeeze my finger? How about with your other hand, over here? Nancy, wiggle your toes. That was great, can you lift this leg? Lift this leg!" The EKG alarm is going off in the background again, pulse 127 BP 184/95. Must be the high BP.

Just back from a chat with the renal doc. She's concerned that the abscess is putting pressure on her spinal cord. Nancy isn't moving her right leg very much at all, though she moves her left.

Pulase 133, BP 171/73, SPO2 96%, temp 38.2. Damn, up another two-tenths. They are about to start the nursing shift change, and I have to leave for an hour. I have to eat something.

Very scary indeed.

-tdc

Very scary (day 4)

Everyone,

Nancy is pretty much the same this morning, sleeping a lot, and able to barely nod yes or no. She's retaining a lot of water, and her kidneys are working but weak. So we are watching and waiting, praying for her kidney function to pick up and infection to subside.

She had some brief periods of a fast, irregular heartbeat (v-tach), this morning, so she is back on IV amiodarone along with her antibiotic. It's working perfectly, her vitals are all good, and she has been resting comfortably for the last hour.

This is all still very scary. I've been giving her reiki when there are good opportunities. I'm not sure if it's helping her or me more.

Love,

-tdc

Out of control (day 3)

Hi, everyone.

Nancy is stable and comfortable and sleeping, and her infection is still out of control. She was very groggy this morning when I arrived, not really lucid, and was not on any pain meds, so the ICU staff is pretty sure that the infection was causing her lack of awareness. Her atrial fib is gone, her pulse is a steady 105-110, blood pressure and everything else is good. The exact strain of infection was identified early this afternoon, and they switched from IV vancomycin to a harder-hitting, more appropriate antibiotic. I think she is now on nafcillin.

After we discussed options, we agreed that the best thing to do right now was to give her a breathing tube, and a mild dose of anesthetic to keep her sleeping. She had a second MRI early this afternoon to get an image of the entire spinal abscess, and they are doing an echocardiogram to make sure the infection has not impacted her heart valves.

So the antibiotic should make a difference by midday tomorrow, and she should be getting her abscess drained tomorrow. Right now, we just have to wait. I've gone in to work for a few hours, and will be spending the evening back at the hospital. No other visitors are allowed in the ICU, and no cell phones either, so I'll be restricted to email.

Yes, this is scary. I don't expect any change in her condition today, but if there is, I will let you know.

Love,

-tdc

Hotel Parnassus update

What a full day. Thank you so much for all your encouraging and supportive and loving notes.

There is good news and not so good news. At the moment, Nancy is doing well, she sounded perky enough on the phone to make comments about the design and organization of the hospital ward.

Which is the Cardiac Intensive Care Unit. Tonight she transferred there because she was experiencing "atrial fibrillation", a 200-beat-per-minute, temporary heart condition that can be life-threatening. It's probably a side effect of an infection. I'm not as worried as I was last night, when she was experiencing hallucinations and was very weak. Now she seems back to her usual self.

Read on only if you want the medical data. There are really four things going on all at once. Everything seems to be stable or improving this evening.

1. Her GVHD is steadily getting better. She is still on a ton of prednisone for it.

2. It turns out that the liver test results, tremors, and the hallucinations were apparently happening because the level of one of her immunosuppressive drugs (tachrolimus) got too high in her blood. They stopped the drug to bring the level back down, and these things are improving. No more confusion or hallucinations since this morning. She still has tremors, but they aren't as bad.

3. She still has the septic infection that put her in the hospital three weeks ago. It created a small encapsulation somewhere in her body, probably in her back muscles, and spread over the last few days. It has now created an abscess in her spine, that is impacting her upper body. She is on IV Vancomycin for it, and they are talking about neurosurgery to drain the abscess tomorrow.

4. The infection is probably the source of atrial fib, which is now under control. Her doctors and nurses said she was doing fine, and they have her in the ICU so they can monitor her heart.

I plan to keep sending out daily updates until she is clearly on her way out of the hospital. Much love to all of you,

-tdc

Back in Hotel Parnassus

Nancy is back in the hospital tonight, for hopefully just a couple of days. Her back spasms have come and gone and come again over the last two weeks, and got extremely severe Saturday night. The last few days have honestly been hellish, as her pain levels skyrocketed, she's needed 24x7 care, and she's been unable to even move at times. Fortunately, we were able to put together a good combination of powerful prescription pain killers, and broke the spasm cycle yesterday afternoon. She still is using a walker to get around, and her shoulder and neck muscles are locked up, but she seems to be past the worst of the pain.

However, at her normal clinic visit today, some of her liver function tests did not look good, so they want to run a series of tests. Ultrasound, MRI, more blood work. And there are other issues. She's still on a very high dose of prednisone, and her hands are now shaking a lot, which is a common side effect. Her blood oxygen levels were a bit low, and she was getting pretty loopy this afternoon, so she's on oxygen, and doing better. We don't know what this all means yet.

I'm being brief because I'm pretty short on sleep. So I will send an update when we know more. Like many nights, I have a candle burning on our kwan yin altar, a comforting light in the darkness. Help me hold the vision for her complete recovery.

Love,

-tdc

The trials of GVHD

Friends,

Here is a brief update from my last note, a couple of weeks ago. Nancy started treatment for GVHD, and she's gradually getting better. It did not respond as quickly as we all hoped, so her dose of prednisone got bumped up last week to 90mg per day, and now the rash is going away

I can't speak for her, but for me, it's a little odd how I've become accustomed to all of this. She still has a Hickman catheter installed in her shoulder, which we dutifully flush each day, a little 5-minute sterile ritual. She looks like she got a bad sunburn on her face and chest and shoulders, a little unusual, but not enough that you would look twice if you saw her on the street. I'm impressed that she hasn't had a complete melt down, as the rash was very itchy and uncomfortable (and everywhere on her body) for the first week.

In fact, our relationship seems better than ever, and we're (mostly) being very kind to each other :-)

At her clinic visit today, they may decide to finally remove the catheter, which will be a significant milestone. And she's generally feeling pretty good, preparing to go on a 10-day retreat in Arizona beginning later this week. I too am going to take some vacation. We both need down time.

Love,

-tdc