Could use some prayers

I've been reading the thread on the Royals and the revoked credentials, which has turned (in part) into a dialog on lawsuits, and I'm struck by the thought that sometimes the threat of legal action seems to be the only thing that gets people's attention. Case in point: My sisters and I presented this letter today to the patient advocate at M.D. Anderson Hospital.

Since we wrote it, a most critical bullet item should be added to the top of the list -- and will be discussed at the meeting we called with her care team leaders for tomorrow. The item? Although our mom has been receiving fluids constantly, she has been without food for nearly a week. Today, when the subject came up as an aside with a doctor and nurse present, the nurse said she's not supposed to be receiving any food, and the doctor interrupted and said he'd written orders days ago saying she should be back on food, especially protein. Could this explain her rally of Thursday and Friday but her setback Saturday-today? You can bet we want to know and will talk about it in the meeting.

We are now required to wear gloves and paper masks when we are in her room, because after a week of testing for this latest (bacterial) pneumonia, doctors tell us it's resistant to drugs, so we have to take extra precautions. Ah, now they tell us.

Anybody know a good, scary lawyer who specializes in medical malpractice?

 

Oh, here's the letter we wrote (before the latest news):

***** ******, our mother, has been hospitalized in Houston since her
fourth biopsy (April 10, 2006). Since her first biopsy late last year
in **** *******, a series of setbacks has derailed her recovery from
what we came to think was her primary problem, lymphoma, so much so
that respiratory problems and multiple bouts of pneumonia have her
fighting for her life on a high-pressure ventilator. Facing an
uncertain but seemingly grave prognosis, we hold out hope but have
questions that need answers and concerns that need to be addressed:

•       Was she released to Kindred Hospital too soon? Her first round of a
low dose of Cytoxan was completed Sunday, June 4, and she moved two
days later to Kindred. Within 48 hours she showed signs of respiratory
distress. She was back on a ventilator Thursday, June 8. She was in
serious trouble and moved back to M.D. Anderson on Monday, June 12.
•       Considering her compromised immune system, was every reasonable
precaution taken to protect her from developing bacterial pneumonia?
While it is unclear if this began before or after she was moved to
Kindred, her doctors appear to accept that she was at high risk
because her body had severely reduced defenses against infection at
that point. Should this also have been a red flag relative to moving
her so quickly to Kindred?
•       Was her move from Kindred back to M.D. Anderson typical of the way
such patients are transported? The attention and care she received
during the move seemed minimal and marked by little forethought. She
moved from the climate-controlled environment at Kindred through the
sweltering heat outside to the inside of an ambulance that was
inadequately cooled. By the time she arrived in the ICU at M.D.
Anderson, she was soaked in sweat and flushed from the heat, which
cannot be good for a patient with respiratory issues and her other
myriad problems.
•       Is there adequate training at M.D. Anderson for sensitivity to
patients' psyches and their sense of trust they are placing in others
for their care? The ICU doctor on duty when she arrived asked, "Why is
she here?" In the sense of information-gathering, it's a fair
question, but its method of delivery sounded cold and unwelcoming and
did little to assure her -- and us -- that she was in good hands and
would be cared for as needed.
•       What about such training for dealing with family members of
patients? When one of us called ICU in the middle of the night to
inquire about our mother's condition, the nurse said, 'Don't get your
panties in a wad.' As much as we understand the pressures of the work
at M.D. Anderson and our own capabilities of adding to the
frustrations with our many questions and suggestions, this comment was
completely inappropriate.

 

In the spirit of helping you evaluate your approach, but chiefly to
help ensure our mother receives the best possible care from this
moment forward, we feel it necessary to reiterate points previously
brought to your attention:
• After three weeks in ICU, our mother was on the floor for a short
period of time, and her electrolytes were not monitored often enough
to find that her sodium level had dangerously dropped. She was moved
back to ICU.
• She went into renal failure because of Amikacin, yet it was not
noted on a prominent place in her chart. The same drug was nearly
administered again for bacterial pneumonia.
• She half-dropped to the floor one day when two nurses aides tried to
move her to a chair-side commode. The nurses aides overestimated our
mother's strength and ability to control her body, and they nearly
dropped her completely to the floor. She was unable to control her
bodily functions, and she evacuated there on the floor and on herself.
It is difficult to convey the level of stress, panic, fear and
humiliation a patient feels in such situations, nor the toll such an
incident takes on her dignity, sense of trust and ability to maintain
a positive outlook relative to her recovery. The nurses aides were
either ill-prepared for the situation or ill-equipped to assess the
situation, and we were left wondering about the wisdom of leaving them
to handle it without the expertise of a nurse or supervisor.

We're aware of the complexities of our mother's situation. We
recognize the many improvisations staff is required to perform in such
situations, but after seeing her sitting up and talking and looking
fine two weeks ago and now seeing her day after day, heavily sedated
and unable to communicate with us, fighting for her life, we are left
asking so many questions. Did she get to this juncture in part because
of gaps or mishaps in her care? Where do we go from here?

Please understand we are grateful for the many amazing and wonderful
things M.D. Anderson and Kindred have done for her. If we were to list
them here, we would have hundreds of pages, not two. Yet, in tracking
her condition and her care since November, we have multiple spiral
notebooks filled with strange twists and contradictions that leave us
puzzled, hurt and questioning ourselves. Our frustration dates to her
surgical biopsy late last year in **** *******. Three nights before
it, the pulmonary doctor who requested it said he was thinking she
probably had lymphoma. Upon emerging from the biopsy three days later,
the surgeon recommended by the pulmonary doctor and agreed upon by us
answered our questions about lymphoma by saying, "We weren't looking
for lymphoma." Since then, we have been hyper-sensitive to all
information we receive, and we hope you understand why.

Our mother's lymphoma doctor suggested a patient-care meeting should
be a high priority pending her X-rays and condition Monday, and we
hope this letter and that meeting help move everyone involved forward
in ensuring the right decisions and the proper restraint will be
employed so she isn't put in potentially compromising situations that
could stop her from having any chance of recovery.

Signed,

 

Pos vibes . . . pos vibes . . . pos vibes . . .

 

JD,

Your letter is spectacular. And ask questions that should never have to be asked. It appear that it has become necessary for you and your family to force the hospital folks to do things the way they are supposed. Should I ever find myself in your position with any member of my family, I will use your eloquence as a guide.

You are in our prayers.

 

Our emotional rollercoaster ride continues. Early Wednesday, we scheduled a meeting for 5 p.m. today to talk about the tough decisions associated with realizing a last-resort medication, in this instance an antibiotic, won't help eradicate infection and pneumonia. In other words, we were going to talk about when and how to face the end.

Late Wednesday, a pulmonary doctor told us mom's outlook didn't look good, and we went into more detail than I will here. Then we came back to the hospital this morning and met first with the infectious-diseases team, and they told us mom's numbers were stable and showed modest improvement. A few minutes ago, the lymphoma team came in and said the same, adding that they recommend continuing the same approach as the last few days to see what happens. Mom has yet to experience kidney failure on this medication -- and she's at high risk for it -- and her CO2 numbers are the best they've been this week. Nothing on the X-rays made any doctor do cartwheels, but the general feeling is she is showing enough improvement to stay the course. The 5 p.m. meeting today won't happen, the lymphoma doctor said, because "We can't tell you to give up right now."

Of course, every improvement has been met with a setback, and the doctors and nurses have been telling us all along to more or less expect that, so we're trying not to let ourselves get too excited about this news. It's certainly better news than we expected to hear today, but we're aware the onset of kidney failure can come suddenly, and of course her underlying non-specific respiratory disease and distress show no signs of long-range improvement.

That being said, our mom is one tough cookie, and she's hanging in there. She's still in heavy sedation, but when we took turns having private conversations with her, she showed various signs of arousal. Whether or not those were conscious reactions or reflex, we're not certain, but we believe she can hear us and is fighting as hard as ever for her life. We're hopeful this strong antibiotic helps her do that.

Bottom line, the doctors said: Continue the treatment and reassess daily.

Prayers are still welcome.

 

God bless, J_D.

I can only hope she (and you) are comforted in the ways you need.

 

The prayers will always remain my man.

 

She certainly is a tough lady. I'm so glad to hear of the small improvements.

Thinking of you...

 

Mom has turned a corner, a big one. What it means in the long term is uncertain, but Saturday was a turning point. The doctors had planned to switch her to the regular ventilator first thing in the morning, then said her numbers weren't looking good enough. At the end of another long day, we spoke again with the ICU doctor about many of the same issues we'd been discussing for days. The main one was our frustration about the continual delays in making the switch. The doctor said she wouldn't do it until she was sure it was safe for mom.

We broke for dinner, and when we returned, we discovered they had switched mom to the regular ventilator while we were gone. She tolerated it well until we had to leave for the night. Her body temperature climbed to the closest point to normal since I've been here, and her kidneys were still holding up strong. Without the strong vibrations and jack-hammer sounds of the high-pressure ventilator, she seemed much more like herself, even though she was still under heavy sedation and not able to open her eyes or communicate.

I won't go into detail, but I saw respiratory therapists and nurses remove a lot of debris from her mouth and lungs that were no doubt making it harder for her to breathe, and after the expected harsh reactions to that cleaning, she seemed to settle in and breathe more comfortably. Perhaps that was one of the last hurdles to allowing them to switch vents.

We know she's still at high risk for infection, and she might not tolerate the regular vent long enough to be brought out of sedation so we can communicate with her, and the doctors can make no promises about anything longterm, but this is a major hurdle she passed. Our emotions range from euphoria to cautious optimism to numbness after such a rollercoaster ride, but we're all excited about the possibility of another good day and the chance we will soon be talking to her.

We're still gratefully stockpiling prayers from all corners.

 

JD, the prayers aren't stockpiled. They are being used with plenty more to spare. Hang in there.

 

Great to hear, JD. Sounds like there's increased hope.