Slow Progress

Not Much Change

9pm Tuesday 30 November 2010

Not much changed today in Michele's condition. Various re-hab folks came by and Dr Fox cleared her for moderate exercise. She is back on a regular solid food diet.

RKS

Some Progress

Dr Fox removed the drain tube between Michele’s scalp and skull this morning. The fluid collection volume has decreased every day since Thursday.

We are still in room 201 but will move up to room 403 later in the week.

Dr Fox believes that we may be able to go home next week. Warren and Robert are working on selecting in-home care workers this week.

Michele now understands almost everything said. She is doing better talking, but that is relative to last week. She also experienced medium time period disorientation today.

RKS

Moving Day

Out of ICU

8pm Sunday 28 November 2010　

The covering doc released Michele from ICU at about 7am this morning and we moved into a room on the second floor at 3pm. Administration is not this hospital’s strong suite.

After Michele had gone to sleep at 7pm, they said that the covering doc wanted us to move to the fourth floor. We shall let Dr Fox duke it out tomorrow.

Otherwise, Michele is doing better and has increased her vocabulary beyond her basic “NO!”

RKS

Some Progress

The Tube

10pm Saturday 27 November 2010

The meds continued to be reduced today. Michele was able to stay awake for several minutes at a time this morning and slept most of the afternoon. She is able to say a few words, most often a loud "No!" She doesn't seem to be enjoying her stay in ICU.


She was somehow able to pull out her feeding tube and throw it on the floor. Apparently she did not like it is my guess. The nurse was hesitant to go through the trouble of reinserting it through her nose down to her stomach and decided to have Michele tested to see if direct feeding by mouth was possible.

A therapist from rehab came in to test Michele with many of her most disliked foods: graham crackers, oatmeal, apple sauce, and chocolate milk. When she initially expressed limited interest in the menu, she was given the choice of the menu or the tube--an easy choice. She passed the test.


Tonight she enjoyed what the hospital chef calls solid food--runny mashed potatoes and triple ground beef. Yummy! We will see what he comes up with tomorrow morning.


RKS

Quiet Days

And Quiet Nights

10pm Friday 26 November 2010

The docs said today that Michele was doing OK and that they did not have any unexpected concerns.

She continues to remain sedated and only opens her eyes momentarily, with one notable exception. In mid-afternoon Miss Exuberance and (her equally evil twin) Miss Peppy made a spirited entrance into the room. The were sent over from the dreaded rehabilitation and physical therapy department. Having been foiled on the third of November (see post), apparently Miss Merry Sunshine was now sending in her cohorts to extract revenge.

Try as she could, but in her weakened condition, Michele was no match for two of them. After a valiant effort, Michele yielded to daunting persistence and superior numbers. She eventually stood on the floor and took a few steps while being supported by the two of them. When released back to her bed, she promptly fell asleep, exhausted.

RKS

　

Recovery Mode

A Quiet Day in ICU

730pm Thursday 25 November 2010

After yesterday’s late night surgery, Michele spent the day sedated -- she completely missed turkey day. The meds are being reduced as the pain subsides, and we expect her to be awake and talking late Friday morning.

A couple of scans and tests were done. Everything was as expected.

RKS

Post Surgery

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Normal Recovery

Noon Thursday 25 November 2010

Everything concerning recovery is as expected.

We will be in ICU at least overnight.

RKS

More Surgery

　

Late Night Surgery

1150pm Wednesday 24 Nov 2010

　

Dr Fox drained the wound area early Wednesday morning and sent fluid samples to the lab for analysis.

Michele remained unconscious and her condition continued to deteriorate throughout the day.

He repeated the procedure late Wednesday afternoon.

The lab results and her condition indicated that the infection growth was not being hindered by treatment with antibiotics. (Note to medicos: Enterobacter cloacae -- cefepime / maxipime )

At 930pm he decided to perform surgery to remove a portion of her skull in front of her left ear. He planned to remove a bone flap about two inches (5cm) in diameter and replace it with a titanium screen.

The surgery began at 1030pm and was successfully completed at 1130pm.

Hopefully, we will be home by the middle of next week--02 December.

RKS

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End of ICU in Sight?

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Goodbye Catheter.

And Good Riddance

1030pm Tuesday 23 November 2010

Dr Fox removed Michele’s skull catheter this evening. This is the first step in getting out of ICU. As a matter of policy, patients with a skull penetration must stay in the real hospital (ICU) and are not allowed in the hotel portion of the hospital upstairs.

This is the best news all week. We still have a serious infection to worry about and are still accumulating cerebrospinal fluid under the scalp. Removing the catheter is our first sign of progress.

RKS

Staying in ICU

Holding Pattern

1030am Monday 22 Nov 10

Dr Fox decided this morning that Michele will stay in the intensive care unit (ICU) for at least a few more days. At the earliest, she may be released Wednesday, but will probably spend Thanksgiving in the hospital.

The catheter in the top of her skull has not drained much cerebrospinal fluid (CSF) during the last 24 hours, indicating that the pressure on her brain has been relieved. But CSF is still leaking from the scalp incision area.

Dr Fox drained the accumulated CSF from the scalp flap then added some stitches to the incision to stop the leakage. It still looks like a scalp infection and he sent a fluid sample from the scalp area to the lab for a 48 hour biological culture study. The microbiologist did not find any organisms during the initial inspection. Last week’s sample from the brain area proper did not indicate any bacterial growth. Is a puzzlement.

So here we sit, healing ever so slowly.

RKS

No News

Doing Fine

6pm Saturday 20 N0vember 2010

Is "no news" "good news"? Nothing happening--just waiting on Monday morning, our next decision point.

Everything getting back to normal and healing.

RKS

Back to The Hospital

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Fluid Accumulation

4pm Thursday 18 November 2010　

Michele seemed to be recovering nicely from surgery (28 Oct) until Tuesday afternoon, (16 Nov)

Shortly after one o'clock, Michele became highly agitated and soon developed a severe headache. She said that she was experiencing the worst pain of her entire life. She believed that she was about to die.

The surgical wound area under her scalp became engorged with fluid and nearly clear fluid began flowing out of the incision area. When the ambulance arrived, her blood pressure was elevated to well over twice normal levels.

At the St David’s emergency room, morphine and other drugs were administered and a CT scan was done, The scan indicated a large accumulation of blood and cerebral spinal fluid (CSF). Dr Kit Fox, her surgeon, extracted about 50 cc of cerebral spinal fluid from between the scalp and skull in the area of last month’s surgery. This greatly improved Michele’s condition.

In the vernacular, Michele had “blown a gasket.”

Michele was sent up to the fourth floor at about 8:30 PM and was able to rest quietly throughout Tuesday night.

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Wednesday morning, Dr Fox decided to implant (under the skin) a small “shunt” (plastic tube) to redirect or drain the excess cerebrospinal fluid from the surgical area to Michele’s abdominal area.

Michele was in surgery from 4 to 6pm Wednesday.

When Dr Fox opened the wound area, he did not like the color and texture of the fluid he found. Instead of putting in a shunt, he drilled a hole in the skull outside of the wound area and inserted a catheter to reduce the pressure and to drain the fluid into a collection bag. He has ordered an analysis of the fluid. The results will be available Saturday morning.

Another 100 cc of CSF has been collected in the 22 hours since surgery closure. Scans are scheduled at 12 hour intervals.

Michele will remain in ICU at least through Monday.

Dr Fox will evaluate the situation Monday and determine our next action.

RKS

At Home

The First Week at Home

Wed 10 Oct 10

As the astute observer has surely surmised, this surgery recovery has been much more arduous than the previous surgeries. Michele is making progress and has a mixture of good and terrible days.

Today’s problem was a cerebrospinal fluid leak from the surgical area. Cerebrospinal fluid surrounds the brain and spinal cord. A large leak can cause serious problems, hence, a quick trip to see Dr Fox, the surgeon. He evaluated it as a small leak and we will see him again Friday morning for another evaluation.

We met with Dr Chadha, the oncologist, last Wednesday. He has not found a suitable Phase III (experimental) treatment option, and he is not very confident that he will find one that will accept Michele. We have been through all of the appropriate standard FDA approved treatment options and three surgeries and have lived much longer than the median life expectancy. All of that does not make her a good candidate as a study participant. This week, we are not even sure that we would want to participate.

Dr Chadha had a sample of the tumor sent to a lab for a detailed molecular and DNA analysis. Most chemotherapy treatments are most effective against certain molecules or genes found in the various varieties of Glioblastoma multiforme (GBM). Armed with the analysis, he might be able to find a suitable treatment. (For you medicos, we want to find out, in particular, if the MGMT gene is methylated.)

Our next meeting with Dr Chadha is scheduled for Friday, 03 December, which is right after our next MRI.

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In other news:

Last weekend, Karl, my son, and his wife Liz came in from Little Rock. It was a wonderful visit. I took a mini-vacation and put them to work. They fixed all the meals and did many drudge tasks that we had been putting off for weeks. Liz fixed an apple desert Friday that was so good that Michele had seconds. Near as anyone could remember, that was the first time Michele has ever had seconds on deserts.

Liz also baked peanut butter cookies for Michele. Can you believe that Michele would eat a cookie? Debra D-S, from the Statesman, brought some PB cookies to Michele last month and Michele gobbled up every one of them in two days. This is not the same woman that I married.

This week, Carrie, one of Michele’s dearest friends, who goes all the way back to Hong Kong, will be helping out. She is always a joy to have visit and brightens Michele considerably. We plan to find plenty for her to do.

Michele continues to work on her latest book, with much help from Mary Ann R. and Catherine R. I think that they hope to have the first edited draft finished before Christmas. It has truly been a labor of love by two very good friends.

Next week, Michele thinks that she might be strong enough to begin working out at the gym again. Audrey was working wonders with Michele before the surgery. The improvement was phenomenal.

We don’t expect much to happen until the next MRI and meeting with Dr Chadha, so the blog will be closed down until 05 December or there abouts, you all.

　

RKS

Finally, Free at Last

The Days are Just Packed

2345 Wed 03 Nov 2010

By 10am, Michele was asking everyone (nurses, techs, therapists, housekeeping, food service, volunteers, etc) in sight when she was going to be released from rehab jail and would be allowed to go home. All to no avail until noon when she hit upon a supervisor named Bill, who determined that Michele was a friend of Mary and Bruce H. Then it was smooth sailing. Bill tracked down everyone who needed to sign and initial all the forms and had everything waiting on the final signature by the admitting doctor.

The morning was filled with more evaluations and therapy. The afternoon was filled with analysis and recommendation reports. One very good bit of news is that they firmly believe that with a lot of work, Michele will be able to improve her speech and could eventually be able to read novels again. We will begin looking for a home therapist next week.

During the admitting doctor’s exit interview, he said that Michele’s progress was most remarkable. Last week he thought it would take her a week to rise to her current recovery level. He just did not know her as we do.

We arrived home just as the five o’clock rush hour traffic was peaking. And then had something most unusual--a really hot, not warm, hot dinner. Then, what else, of course, to bed and sleep.

We have a meeting Thursday with the oncologist to discuss the next treatment plan.

RKS

The Way Home

The Last Night

0900 Wed 03 Nov 2010

So tell us Ms Kay, how was your day, did you sleep well last night?

MK: Wednesday began like any other day, shortly after midnight, I guess. It might have been dreary, but I was weak and weary--recovering from surgery, you know. I was sound asleep--not merely napping.

But not for long. I heard a tapping, then a rapping at my chamber door. "'Tis nurse Twit," I muttered. Before me appeared nurse Twit, who I could plainly see because she had turned on the overhead light. She administered an unknown number of pills for an unknown malady. Apparently, the unknown malady can only be cured by consuming pills at midnight. Something to do with the bewitching hour. Halloween was Sunday, you know.

Since sleep is the golden chain that ties health and our bodies together, and all the medical folks must know that, you then had a most restful night, correct?

MK: Not quite. An hour later, nurse Twit reappeared before me in the vapor of the night light. Apparently, 1:30 am is a lovely time to test your blood sugar level. However, she could not get the blood-sucking machine to work, so she turned on every light in the room to determine the problem. Lacking the necessary mechanical skills, she left the room for remedial training. She also left every light in the room on. She appeared forty minutes later and completed the test.

What next?

MK: I reached for sleep and drew it round me like a blanket, muffling pain in the merciful dark. I slept soundly for a good twenty winks.

However, having previously implied (in a most subtle, but direct, manner) to nurse Twit that she woke me up, my tormentor reappeared before me at 3am, shinning a flashlight onto my closed eyes and attempted to make amends by forcing a sleeping pill on me.

Then you had sleep, safe and restful, sleep, sleep, sleep?

MK: Not quite. At 7:20 am Miss Merry Sunshine, the physical therapist, bounced in and asked if I was ready to do some stair climbing.

Was your response printable?

MK: Quite. I was able to open one eye and asked, “Why would I want to do something like that?”

I assume that you were giving her “THE LOOK” with only one eye.

MK: I don’t know what all this talk about “THE LOOK” is about, but Miss Sunshine did leave rather quickly and quietly.

And then?

MK: I dozed for a few minutes, then I figured that by that time, they were bound to be serving hot coffee and warm croissants soon. That would be spot on. So I got up. I was eager to have my first breakfast in my new room. You just cannot sleep the day away if you want to be a good rehab patient.

I think we had best end the interview now. Deadline, you know. Thank you, Ms Kay.

MK: You are welcomed. And thank you very much. Think that I will get some shut-eye now.

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Going Home?

Ending Rehabilitation

2300 Tuesday 02 Nov 10

Faithful readers will recall that yesterday I noted that Michele was to start rehab at 7:30am. The faithful will also remember the closing -- wondering how much serious rehab Michele can stand. (The unfaithful can look at yesterday’s blog.)

The answer is one day.

When Michele returned to her room after her last session late this afternoon, she announced that she felt rehabilitated and that she was going home Wednesday. After much discussion, she decided to compromise and would give them until 5pm to complete their typically one week evaluation, findings, and recommendations. ( It reminded me of her compromise on where we should live when we first got married--I moved 20 miles south and she moved a mile north. )

St David’s has exceptionally nice people and great facilities, but Michele just wants to go home. Sadly, I think that she could have really gotten something out of it.

RKS

Moving Next Door

Starting Rehabilitation

2345 Monday 01 Nov 10

This afternoon we moved from the general hospital to the adjacent St David's Rehabilitation Hospital. The room, number 411, is much smaller than what Michele is used to, but is probably much nicer than most hospital rooms that I have been in.

They are serious about their rehab mission. Michele's first session starts at 7:30 tomorrow morning. I plan to be absent. Even some engineers have read Chaucer and know "It is not good a sleeping hound to wake." Seriously, I mean, this women does not believe that normal people can begin their workday at eight o'clock each morning. Phone her sometime before ten AM and you will know what I am talking about. I speak the truth. She thought the fire alarm yesterday at 8 AM was bad. Now they expect her to be up and doing something productive at 7:30? LOL.

The rehab may last two weeks. We will see how much Michele can stand.

RKS