Background: My quadriplegic, ventilator-dependent [multiple sclerosis] wife, Tina Su Cooper, suffered prolonged seizures Monday night, July 10th. She spent the next eleven days in Orange Regional Medical Center (ORMC) battling the seizures and infections. She was sent home Friday, July 21st, unconscious (vegetative state or minimal consciousness) but medically stabilized. She had been unresponsive in the hospital. Her recovery was in serious doubt.
Eight days later, Tina had to return to ORMC due to a body temperature of 92oF, eventually ascribed to being a side effect of one of her medications, valproic acid (Depakene). At home, she had been somewhat responsive, enjoying TV and replying rarely and briefly to our queries.
I'll record here some highlights of her recovery at home/hospital as they occur:
19 September: Tina continues to be generally healthy, although sleeping more than seems normal. Her breathing is so strong that she had excellent blood oxygen levels (98%) after about five to ten minutes off the ventilator. Up in wheelchair for an hour this afternoon.
05 September: Almost a month since Tina's been home. Still sleeps a lot but when awake is aware and appropriate. I kissed her in bed this morning, and she told me, "I love you very much." That feeling is mutual!
31 August: Good check-up today with new pulmonologist, Dr. Park, who complimented our staff on the care Tina has received. Tina was quiet this afternoon but spoke clearly, with affection and appreciation, tonight.
30 August: Tina's medical check-up yesterday was fine.
Watched an hour of the Food Channel with me in the kitchen. Tonight she was alert and somewhat communicative, appropriately. Tomorrow, off to a pulmonologist's exam.
26 August: Tina continues to improve, slowly, with lots of naps during the day. Younger son, Phil, visit yesterday and was impressed with her recovery. Elder son, Ted, was able to hold a quite limited telephone conversation with her. He plans to visit in early September.
20 August: Tina up in wheelchair for 1.5 hours as we watch romantic Hallmark Movie Channel movie on TV this evening. Tells me she loves me with all her heart. (That makes it even!) Responds briefly in whisper to Ted's call, thanking him.
18 August: Early evening, watching TV. Doug, "How are you doing?" Tina, "I'm very happy."
16 August: Tina to afternoon nurse, Casey Partridge, "I'm so happy to see you." To Doug, "I want to get up." Out of bed for about an hour too watch TV in the kitchen, choosing program. Vital signs within normal limits (WNL). Mood: good.
14 August: Tina slept well this afternoon (100% O2 blood level, 66/min stable pulse rate), then spent an hour in the wheelchair in the kitchen with me, watching the Food Channel and responding with whispered answers to a few short questions. In fine spirits.
12 August: Continuing improvement. Nurse Melissa Brengard says Tina is in best shape since MB started working here three years ago. In kitchen, Tina and I watched Hallmark Movie Channel together, then Tina asked to go back to bed; once there, she asked for classical music channel.
10 August: Home now, watching TV, listening to music. Out of bed for two hours for trip to cardiologist: no significant cardiac problems. Later, she whispered her thanks for taking her.
09 August: Vital signs all good. Some extra variation in heart rate, to be discussed during appointment with cardiologist tomorrow. This morning Tina told nurse Dori Oskam, "I'm made of tough stuff," which I have often said to her. Just now she told me, "I'm so happy to be home."
07 August: slept well. When awake, getting care, she several separate times thanked Nurse Dori Oskam, "Thank you very much, indeed," Tina said. Indeed!
06 August: came home 1 pm. Expressed self clearly, verbally,
"Thank you very much." "I'm glad I'm home." Asked
how she felt after hair wash, "refreshed." All systems within normal ranges, responding well to meds. Now (3 pm) asleep.
05 August: awake more and somewhat responsive at ORMC. Needs to stay one more day to track blood values.
04 August: awake occasionally and somewhat more aware, yet still fighting a minor infection, Tina is scheduled to return home tomorrow, Saturday, 5 August.
02 August: still mostly sleeping. Barely aware when awake. Weaned off valproic acid, now on higher Keppra dose plus dilantin...anti-seizure meds. Possibly going home tomorrow (Thursday) or Friday. Blood pressure and pulse rate rather variable, partly controlled by meds. Mild fever not being treated at present, to avoid conflicting drug effects.
01 August: condition unchanged. Low body temperature ascribed to valproic acid (Depakene) anti-seizure medicine.
31 July: Tina mostly sleeping at ORMC. When awake, barely responsive. No cause determined yet for low body temperature. No infection. CAT scan negative. Possibly reaction to anti-seizure meds. Fluctuating blood pressure stabilized with med.
30 July: Tina back to ORMC Critical Care Unit. Temperature of 92oF at 11 p.m. indicated infection.
29 July: We spent a half-hour watching TV together in the kitchen this afternoon. As I silently drew close to give Tina some more kisses, she mouthed the words, "I love you."
28 July: Nurse Melissa Brengard bathed Tina this morning,
"Thank you," Tina responded, smiling.
MB: "How are you?"
T: "Fine, fine, fine."
MB: "How many children do you have?"
MB: "What are their names?"
T: "Ted, Phil."
Came across the following story of a youth in what seemed to be a vegetative state that eventually resolved:
http://healthskillet.com/this-man-was-trapped-in-his-body-for-13-years/ meanwhile, he was aware for much of this period.
July 26th: awake longer, directing gaze at caregivers. Tried to speak in response to my, "I love you with all my heart...."
This, July 25th, afternoon, nurse Melissa Brengard greeted Tina and asked her how she was doing. "Better" Tina replied softly.
On Monday, 24 July, overnight, Tina said, "Thank you," in response to care being given by Nurse Audrey Pottinger.
On Sunday, 23 July, Tina frowned in response to being
moved in the bed by nurse Casey Partridge and myself.
On Jul 23, 2017, at 1:54 PM, Doug Cooper <firstname.lastname@example.org> wrote:
Dear Family and Friends,Tina returned home via ambulance Friday night, the 21st.ORMC had stabilized her condition. Final diagnosis was that she is in a vegetative state due to a brain infection with many days of seizures subsequent to the infection, which infection may or may not still be occurring.She mostly sleeps, with periods of wakefulness with doubtful responsiveness, except that this morning when the nurse, Melissa, spoke with her, Tina replied "How are you?" This is quite encouraging, and as the attached article indicates, this is more like "minimally conscious" than "vegetative state" and has some hope for a partial recovery of her former cognition and makes it likely that she has some awareness.
It's great to have her home, and we were fortunate to have Phil and Ted here this weekend, to help and to encourage, as other members of the family have done recently.I won't be emailing more updates unless something else dramatic occurs.Thanks for your concern and love,Doug (and Tina)Minimally Conscious State - Brain, Spinal Cord, and Nerve Disorders - Merck Manuals Consumer VersionDouglas Winslow Cooper, Ph.D., 264 East Drive, Walden, NY 12586, (845) 778-4204Author, freelance writer, book coach, caregiver and retired physicist. Rational idealist.Sent: Wednesday, July 19, 2017 8:03 PMSubject: Re: TINA HOSPITALIZATION, 19 July 17
Dear Family and Friends,ORMC expects to release Tina to our home tomorrow (Thursday, 20 July) afternoon.The have stabilized her condition, and her various vital signs and blood component values are within normal limits. However, she will be getting 10 to 20 times the seizure- suppressant medication, Keppra, than she was getting at home. She is mostly sleeping and when awake seems unaware of her surroundings, although she has shown a bit more facial activity these past couple of days than earlier in her hospitalization.The MRI a few days ago indicated some brain damage, some encephalitis, but the assays of her cerebral-spinal fluid showed no bacterial or viral activity, and the antibiotics for these have been discontinued.The cause of the seizures might be MS, although only a few percent of MS victims have these. The cause may have been low sodium in the blood, which even when addressed, left her more susceptible to follow-on seizures.We hope to make her comfortable at home and perhaps be blessed by healing of her brain.Thank you for your continuing love and concern...and prayers.With love,Doug (and Tina)Douglas Winslow Cooper, Ph.D., 264 East Drive, Walden, NY 12586, (845) 778-4204Author, freelance writer, book coach, caregiver and retired physicist. Rational idealist.
Sent: Saturday, July 15, 2017 6:22 PM
Subject: Re: TINA HOSPITALIZATION, 15 July 17
Phil and Lisa visited today and we saw Tina and the staffat Orange Regional Medical Center (ORMC). She is asleep, seemingly peacefully, almost all the time. When she is awake, she is unresponsive, perhaps unaware, though the EEG indicates brain activity and some sub-clinical seizuresThey are treating various problems, including an apparent brain infection that may be the cause of the continuing seizures, which unfortunately are themselves likely to be ding some damage. Treating a viral brain infection could take weeks, some of which she will likely be at home. ORMC have been able to reduce the anti-seizure medications, which may mean they are making progress with the brain infection.We don't know what degree of awareness Tina will end up with, but for now we are continuing to urge aggressive treatment.With our love,DougDouglas Winslow Cooper, Ph.D., 264 East Drive, Walden, NY 12586, (845) 778-4204Author, freelance writer, book coach, caregiver and retired physicist. Rational idealist.
Subject: Re: TINA HOSPITALIZATION, 12 July 17
Tina has been "unresponsive" since Monday night, whether asleep or seemingly awake. She is experiencing almost continuous seizures, which are both symptoms of some brain damage and the cause of some increased damage. The cause of the seizures is unknown. She had been given a lumbar puncture (spinal tap) late this afternoon to sample the cerebral-spinal fluid for possible evidence of infection of the brain, and she is getting an anti-viral medication (acyclovir) even before we get the results of the analysis of the spinal fluid. Tina is receiving four different seizure-suppressing meds now, and she has received several anti-bacterial antibiotics for the UTI, The pneumonia diagnosis is now believed mistaken (x-ray artifact).I just got a call from one of our nurses. She told me that the doctor that did the spinal tap a few hours ago commented that the fluid was yellow, rather than clear, a sign of infection, and that "this problem has been brewing a long time," without specifying how long. CAT scan ruled out tumor. MS is a possible cause, but not much can be done if that is it. An infection, on the other hand, is often treatable, so this may be good news.Because of the continuing seizures and the escalation of efforts to stop them and yet preserve critical processes, Tina's life is in jeopardy, but this latest informationis somewhat encouraging.Thank you all for your concern and prayers.Love,DougSent: Tuesday, July 11, 2017 11:09 AMSubject: TINA HOSPITALIZATION
Tina developed seizures last night. Not life-threatening, but worrisome. Our GP recommended we sendher to the hospital. She is at Orange Regional Medical Center, ICU Room 3309. As usual,we have one of our nurses there to supplement the hospital staff and facilitate communication.Diagnosis: urinary tract infection, possible pneumonia. CAT scan of brain was negative: no problems.Typically, they try to get her home in a few days.We don't use phone mail, but you can reach me either at home or at my cell phone number, 914 450 1754.Love,Doug