LISA TODAY

March 30, 2006
37 Days in …
St. Joseph Medical Center
Phoenix, AZ

Baby Michael is seven-weeks old today. He began celebrating the event last evening about 10-minutes before his father came home from a busy day on the job. Michael had just polished off 4-oz of Similac, and started smiling at me. WOW, a first… well almost a first, it was actually a gas attack, and then, he started the fireworks… in the form of huge barf rocket which landed on my chest and covered me from shoulder to waist. Sherry took the baby and I took a quick bath. Michael has been getting along just fine. He was examined by a cardiologist to rule out Long Q.T. syndrome the genetic disorder that was the cause of his mother’s ordeal. He passed the EKG examination with flying colors, but to be certain and rule out the syndrome was not passed on to him, he will be followed for a time by Dr. Sampson his pediatric cardiologist.
I told you earlier the Michael gets very unhappy when he is hungry, and at daily, bath time. Here’s what he likes, #1 when he’s eating, #2 when the bath is over, #3 riding in his car seat (I can tell because, as soon as the car starts moving, he zonks out.) There are many new, practical baby-things since Sherry and I were in the baby business. One of them is a bear with a large mirror on its stomach. The bear is placed on the head rest of the back seat and points in the direction of Michael Car seat. It enables the driver to see him through the rear view mirror, and lets the driver keep tabs on how it’s going. He has a wonderful disposition, seldom is unhappy, and sleeps the night through. At this stage of his care, one couldn’t ask for much more. Now this morning after getting a diaper change he actually laughed and grinned at Sherry. It was a gift from Michael that will last her all day.

Unfortunately, Lisa had an awful day today. It started out with Lisa developing an elevated temperature during the night. A cooling blanket was ordered for her to bring her 104 degree fever down. The fiber covered rubber cooling blanket is a 2-inch thick sheet. The sheet contains water and is connected to a chiller which circulates the water through the blanket. It has three settings to regulate the cooling response: rapid, moderate, and slow cooling. The temperature of the cooling system dropped to 38 degrees. Richard watched while Lisa’s hands and feet rapidly turned blue, and her heart rate instantly went from 120 to 150, and she then contracted into a shivering fetal position. Richard needed to assert himself to the nursing staff to get the required amount of attention in order to get the temperature regulated. And while this was going on, Lisa’s temperature climbed to 106.7 degrees. A physician arrived and decided she had had a sepsis infection (systemic blood infection) from the implanted PICC Line*. The PICC Line immediately removed, a central line was placed in her femoral artery, and antibiotic drugs were administered. With the cooling blanket properly set to 74 degrees and the antibiotics doing what they are supposed to do, Lisa’s temperature returned to 99.6, and that is what it was when I spoke with Richard at 6:30 P.M. today (Friday, 31 March 2006).
So as I sign off, Lisa is once again resting comfortably, her temperature, heart rate and respiration is normal. Richard met with the hospital CEO, and two other upper level managers about the situation, and adjustments in staffing were made on the spot. If you have questions, please write to me. mlwintory@msn.com

Michael


*A peripherally inserted central catheter is also referred to as a PICC line. This type of catheter is placed in the large antecubital vein (a large vein in the inner elbow area) and threaded into a large vein above the right atrium of the heart. Unlike other catheters, a PICC line can be inserted by an IV nurse, rather than a surgeon.
The PICC line can remain in place for many weeks or months, avoiding the need for a new IV every few days. PICC lines can be used to deliver chemotherapy, antibiotics, blood products, other medications, and intravenous nutrition. When the PICC line needs to be accessed, an IV line is connected to the end of the catheter. When it is not in use, the IV is disconnected and the catheter is flushed and capped.

Peripherally inserted central catheter

LISA TODAY

March 29, 2006
36 days in…
St. Joseph Medical Center
Phoenix, AZ
http://lisalatest.blogspot.com/


Carol is a Specialty Care Unit professional nurse in charge of Lisa’s care during the past few days. In talking with Richard this evening, she reports that Lisa’s condition is stable and she is continuing to slowly improve. The therapy team (physical, occupational and Speech) are also working with her. Lisa was placed upright into a Cadillac chair for two-hours today, and tolerated it quite well. I would tell you more about the chair, but right now you know as much about it as I do. Lisa’s flexibility is being maintained with range of motion therapy and her vital signs are continually monitored. The Stevens-Johnson syndrome will soon be a fleeting memory and everyone is delighted with that “near history.” Lisa’s patient room looks out over a beautifully landscaped lawn and mature Palm trees. It is a view of promise for Lisa.

You may have heard that folks have been taking an active part in Lisa’s care by donating leave time. The Immigration Customs Enforcement (ICE), Voluntary Leave Transfer Program, Screening Committee has approved a request for Lisa to be a leave recipient under the Voluntary Leave Transfer Program. She has exhausted all of her accumulated leave and donations are needed to help her through this difficult time. The minimum leave donation is four hours. Requests to donate leave must be submitted on the "Authorization to Transfer Leave" form, available from any ICE administrative and/or personnel office. All donations forms must include a current T&A Report. For additional information on how to donate leave, employees can contact the CBP/HRM Laguna Niguel, Calif. Service Center at (949) 360-3063. Donation requests can be faxed to (949) 425-4919.

For federal employees choosing to donate time and who are not with DHS, they are asking that you visit www.opm.gov/oca/LEAVE and complete the OPM 630B form. Once completed and signed by the federal employee, the form must go to their respective payroll office. The payroll office can then fax the form to Ania at (602) 379-3845.

The link to the OPM 630B form is http://www.opm.gov/forms/pdf_fill/opm630b.pdf. If you have any questions, please email Melody.Nelson@usdoj.gov.

Michael
mlwintory@msn.com

LISA TODAY

March 27, 2006

PART II

34-Days in...

St. Joseph Medical Center

Phoenix, AZ

http://lisalatest.blogspot.com/

Lisa, after spending a restful weekend, was seen by a team of therapists: Occupational, Physical and Speech. She was also seen by the supervisor of the team. These are the three components that will be implemented for the first stage of her recovery. The therapist will be sitting her up; moving her around which this will facilitate Lisa spending more time awake. (I’ll talk about wakefulness a bit later.)
When one is not deprived of one’s faculties, the process breathing is taken for granted. Breathe in, breath out. Stuffy nose? No problem, breathe through your mouth. Mouth closed, okay breath through you nose. Put a trach in place, and then it becomes different, but you know about that. But put a Passé Muir Trach in place and it becomes really different. Lisa now, with the new trach, inhales through it, but exhales through her mouth and her nose. It will enable Lisa to vocalize. Meanwhile her heart and respiration rates are approaching pre-Stevens-Johnson syndrome levels. Although it is observed when Lisa is placed on her right-side the numbers are higher.
Lisa is spending more time awake, and her eyes are open for longer periods of time, and she grinds her teeth which is perplexing; however it must be recognized, she remains unable to meaningfully communicate. She is also exhibiting a small increase of spontaneous movement of her limbs indicating her neuro-pathways are reconnecting at some level. These signs give one hope when one realizes these activities are necessary steps toward regaining consciousness. The staff intends to take 2 – 4 weeks working with Lisa to observe how she responds to therapy. Dr. Kwasneca, Therapy Coordinator will also spend a lot of time with her. The medical staff will introduce sound, smell and touch stimulus and carefully look for “any” response. The stimulus to which she responds will be focused upon therefore Lisa will queue her own therapy.

Michael (Richard's dad)

mlwintory@msn.com

“Lisa Today"
March 27, 2006
34-days in…….
St. Joseph Medical Center
Phoenix, AZ

http://lisalatest.blogspot.com/

A wonderful card from arrived from Ben, Gina and Arnold; friends, neighbors, and colleagues of Lisa. Let me share it with you. It was written by Douglas Pagels, on a card crafted by Blue Mountain Arts:

“Hang In There”

Difficulties arise in the lives of us all. What is most important is dealing with the hard times, coping with the changes, and getting through to the other side where the sun is still shining just for you…

It takes a strong person to deal with tough times and difficult choices. But you are a strong person. It takes courage. But you possess the inner courage to see you through. It takes being an active participant in your life. But you are in the driver’s seat, and you can determine the direction you want tomorrow to go in.

Hang In there… and take care to see that you don’t lose sight of the one thing that is constant, beautiful, and true: Everything will be fine ~~ and it will turn out that way because of the special kind of person you are.

So… beginning today and lasting a lifetime through ~~ Hang in there, and don’t be afraid to feel like the morning sun is shining just for you.
~Douglas Pagels

LISA TODAY
March 24, 2006
St. Joseph Medical Center
Phoenix, AZ


Today is different from yesterday, and tomorrow will be different from today. Lisa was transferred from the Arizona Burn Center to St. Joseph Medical Center, Specialty Care Unit. The real work with Lisa will begin on Monday, so today is one of transition, and getting acquainted with her new environment. Richard reports the facility is wonderful. He accompanied Lisa in the ambulance to St. Joe’s. I asked if it was a specialty vehicle, and Richard happily said, “No Dad, just an ordinary ambulance…siren and lights aren’t even on.” That was very meaningful statement to me because the last time Richard was in the ambulance with Lisa, with the siren, with lights churning as they were barreling down the road for the Emergency Room at Northwestern Medical Center. Richard called me in Illinois to ask me to contact Lisa’s Mother, as he didn’t have time to reach her before they left.Fortunately Jack and Napua Davis, in Midwest City, Oklahoma could and did make the link. Then was a night of uncertainty, and fear. Now it is a Friday, afternoon, the sun is shinning. and Perfect for leisurely drive in Phoenix with pride in the people who have made Lisa’s journey a true promise for the future. I’m getting goose bumps telling you about this and not a little unemotional.

Michael
mlwintory@msn.com

LISA TODAY

michael march 23, 2006

picture day

lisa

&

lisa - lisa & richard

oct 03, 2004

LISA TODAY

March 22, 2006
Arizona Burn Center
Phoenix, AZ

Today we didn’t have to look too hard or too far to see the Silver Lining of Lisa’s situation. We, you and I, have been dealing with fear, uncertainty, and doubt as it relates to Lisa. Questions. Questions unanswered: How long is she going to be at the Burn Center? What condition will the Stevens-Johnson leave her in? Of course there are many other questions, but let’s get to the good part. Lisa has sent the Stevens-Johnson syndrome packing! Although the SJS delayed the progress she was making at Northwest Medical Center, it did not stop the healing. The areas of her most severe lesions are showing healthy, pink, and that’s great. Lisa will be ready to leave the Burn Center before the week ends, and her well being is the direct result of the informed, excellent, professional care she received while there.
Lisa February 2005 5
You will recall all the back and forth between Richard, Blue Cross/Blue Shield and Kindred Hospital to work out a special contract to enable Lisa to receive the best care Tucson had to offer. It ended with everyone agreeing that Lisa would transfer to Kindred Hospital. And now? Lisa isn’t going there, at least not right away! The doctors at the burn center recommended Lisa as a candidate for Barrow Neurological Institute at St. Joseph’s. The latest U.S. News & World Report ranks Barrow “…as one of America’s best hospitals in the areas of neurology and neurosurgery.” Barrow is an internationally renowned medical center that offers care to people with brain and spinal diseases, disorders and injuries.

Richard received a call from the Meg, Admissions Coordinator at St. Joseph’s Specialty Care Unit. Normally Barrow only takes patients who are capable of responding to, and communicating with the medical staff; therefore it would seem Lisa would be ineligible for their care. However, it appears that Lisa still qualifies for admission because Barrows has a specialty care unit which works with patients like Lisa.
Now, get this, although Lisa, for the time being, is unable to meet the first criteria, Meg said, “After the attending physician reviewed her chart… [Lisa] has potential for significant recovery.” Richard asked Meg, “Do you realize that Lisa is still in only a minimally responsive state, is that ok?” Meg replies, “It’s not just ok, we have a cortical stem care team that works with patients just like Lisa [in order] to get them into full-blown rehab." Dr. Kwanzaa, the attending physician who reviewed Lisa’s chart, assigned Lisa’s case to herself and will follow her from day one in the special unit until she returns home to her family and friends, new and old. They know this because the part of her brain that was damaged by the stroke controls respiration, yet Lisa breathes on her own! It also controls movement and stimulus response, and yet Lisa moves and responds to stimulus of her limbs. Further, as a plus, Lisa’s vital organs function as normal. Having said this, it still raises another question “How will Lisa gain admission when Barrow has waiting lists and challenging admissions criteria? Once again, people who have been moved by Lisa and her plight involved themselves. Friends to Lisa who by happen stance were in the right place at the right time, friends some old, some new intervened on Lisa’s behalf and made the difference. Two friends and colleagues from Richards work over the years had contacts into Barrows, and were glad to help after they learned of Lisa's story. A third friend, is Lisa's case manager at the Arizona Burn Center, is who got Meg Lisa’s file, this along with her story that did the trick. Here is Barrow Institute’s web address, copy and past it into your web browser: http://www.mha.chw.edu/index.asp?pg=news_BNIBest&supnav=au_news_supnav

Michael (Richard's dad) (Photo: Lisa 02/2006)
mlwintory@msn.com

LISA TODAY

March 20, 2006
Phoenix, AZ

The last three days have been a blur. Lisa as you know is in Phoenix at the Arizona Burn Center; Richard is there also as is Karl and Carmen. So, let me tell you about Lisa first, and then I’ll tell you what the others have been doing.

“Remarkably well” best describes Lisa’s response to the Intra-Venous Immunoglobulin (IVIG} therapy she is being administered. The Stevens - Johnson syndrome (SJS) is retreating. Her doctors began weaning Lisa from the ventilator; so her next step is to breathe again on her own with the trach mask which will have humidity applied. In the short term she’s looking at the resumption of occupational and physical therapy. Dr. Stein, you will remember from Northwest Medical Center in Oro Valley, called for, he said, “fifty people at the hospital, who want an update on how Lisa is doing.” He told Richard,” [her progress] is wonderful and so glad to hear that of her.” Saturday night, she had a low grade temperature, and the staff became concerned with her having increased secretions from her lungs, and was alerted and watchful for early signs of pneumonia. And so she went into Sunday.

Sunday, Lisa had another day of slow, but steady gains. The ventilator was removed and she is now back on the trach mask breathing moisturized air. Her physical therapist set her up in bed to get her head elevated and sit upright! Her temperature returned to normal and all of her other vital signs were “rock solid.” (Rock solid isn’t a medical term, by the way, but instead it’s a legal-description I got from Richard.) Richard also described the SJS is ugly, but is retreating!

Monday Richard met with Social Security officials to begin their paperwork process. The social security agent was very helpful and cooperative. Karl and Carmen remained in Phoenix.

Richard asked me to tell you that the mail at his home in Oro Valley stopped for an unknown reason. I picked up a ton yesterday for him from the local post office, and he took it all with him back to Phoenix. He wants you to know he’ll catch up on acknowledgements ASAP. I would only add, he’s up to his ass in alligators right now.

Michael, (Richard’s dad)
mlwintory@msn.com

The picture above is Lisa on the day of Michael's birth, 10 Feb 2006.

Lisa Today March 18, 2006

LISA TODAY

March 18, 2006

Phoenix, AZ

Saturday, I learned from Richard, the hold Stevens-Johnson syndrome has on Lisa is shrinking. Areas of her body that were blistered are being treated to protect her from infection. Physical therapists (PT) were in to see her. The PT’s are taking a different approach to Lisa’s care. The focus will now be on her long—term care. As an example, Lisa was propped up which was a small, first-step toward getting her hold up her head. The goal is to get Lisa to fire-up her muscles.

Here is a letter written by Melody Nelson, I urge you to read it so you might better understand that healthcare is not the only issue here. Nelson, Melody (USAOKN) Melody.Nelson@usdoj.gov

“One of my closest friends recently had a medical emergency and I am writing to personally ask for your help.

Her name is Lisa Wintory (her maiden name is Goodspeed), and before moving to Arizona 3 years ago, she was a long-time prosecutor in Oklahoma. Lisa is 39 years old and had a two week old baby when her heart stopped beating three weeks ago today. Doctors still are not sure what caused her heart to stop. To make a long story short- she had substantial brain trauma and will need prolonged care. At the time her heart stopped, Lisa was on maternity leave from the Department of Homeland Security.

We just learned that Lisa is running out of sick leave. Once she runs out of leave, it is likely that Lisa's employment will be terminated, and the family will lose medical coverage for Lisa and the baby. Given Lisa's condition, there is no doubt she will have substantial medical bills for a long time.

If you are one of those lucky people with lots of leave, I am begging for you to please donate some leave for Lisa and her family through the Voluntary Leave Bank program. Her family is dealing with Lisa's multiple medical issues while raising a newborn. So you can see the people you would be helping, I am attaching a picture of Lisa and her baby, Michael, taken at a happier time. If you can possibly donate, I would consider it a personal favor. Any amount of leave you can spare will make a huge difference for Lisa and her family. The following explains how to donate leave.

For those federal employees wanting to donate time and who are not with DHS, they are asking that you visit www.opm.gov/oca/LEAVE and complete the OPM 630B form. Once completed and signed by the federal employee, the form must go to their respective payroll office. The payroll office can then fax the form to Ania at (602) 379-3845.

The link to the OPM 630B form is http://www.opm.gov/forms/pdf_fill/opm630b.pdf.

If you have any questions, please email me at Melody.Nelson@usdoj.gov. Thank you very much. Lisa’s direct supervisor at DHS is Patricia Vroom with the Department of Homeland Security, Office of Chief Counsel, 2035 N. Central Avenue, Phoenix, AZ 85004. Her assistant is Ania (pronounced like “Anna”) Harrell. Her phone number is (602) 379-4007”

Michael L Wintory (Richard's Dad, the photo is of Michael Gene and me.)
mlwintory@msn.com

Yesterday afternoon (Tuesday, March 14, 2006) Richard and his father, along with Carmen and Karl, went to Arizona Medical Center, Burn Unit, in Phoenix, Arizona where Lisa was moved. The address for Arizona Medical Center is 2601 E. Roosevelt, Phoenix, AZ.

Yesterday morning, Lisa’s allergic reaction to the anticonvulsant, Dilantin, went from a simple skin rash to blistering body lesions. This indicated and led to the diagnosis of Stevens Johnson Syndrome. This syndrome is a more serious allergic response that causes inflammation in the skin and also the body’s mucus membranes. The cause of this increased response is unknown and the treatment involves treating the symptoms that it causes. Lisa was given steroids to lessen the inflammatory process before being airlifted to Phoenix. It was necessary to transfer her to the burn unit to treat the blistered skin and mucus membrane lesions. Once the surface of the skin is opened, as the blister’s break, treatment is the same as that given to a burn patient. Lisa must be protected against infection and the damaged skin must be removed on a daily basis to allow healing. Because this reaction affects mucus membranes, as well as skin, her respiratory and digestive tracks can be involved and she will need to be closely monitored. The reaction will have to run its course, but like everything else Lisa has had to overcome, this too is possible.

I have personally known two patients, a two year old girl and a 47 year old man with Stevens-Johnson Syndrome after a drug reaction. They both recovered completely from the injury to their skin and mucus membranes.

Last night Richard reported everyone’s safe arrival in Phoenix, but was not able to see Lisa until burn unit personnel were finished with Lisa’s medical evaluation and admission. I’m afraid an urban medical center will not have the same level of personalized attention that was given at Northwest Medical Center in Tucson, but the people who choose to work in a burn unit are a breed of guardian angels unlike any other and we all know that Lisa has her own army of them protecting her.

Friends and co-workers from the Phoenix area have already called and offered accommodations in their homes for Richard, Carmen and Karl. Richard’s dad drove our RV to Phoenix and will be at or near the hospital so Richard will have a bed and place to rest when he is not with Lisa.

Michael will pick up the torch and continue his updates in the next day or two when he returns from Phoenix. Michael and I will be keeping the home fires burning here at the house and caring for the very handsome and growing like a weed Michael Gene.

Within the last hour, (today, March 15, 2006) Richard has reported that the progression of the syndrome has stopped or to use his words “the river has crested, although still at flood stage”. After arriving in Phoenix yesterday Lisa is receiving the full complement of services offered by the Arizona Medical Burn Unit. In Tucson the Intensive Care unit had never treated a Stevens Johnson Syndrome patient, although they were well aware of the condition. The literature states that the incidence of this reaction occurring in patients receiving Dilantin is 4-6 patients per million. Lisa is one of two patients currently being treated for Stevens Johnson Syndrome in the burn unit and they average about one patient with that diagnosis a month.

One of the new treatment options that we had researched before Lisa’s transfer included the use of IVIG (Intravenous immunoglobulin antibodies), a total immune system antibody replacement. At Arizona Medical that treatment was part of the routine protocol used to treat Lisa when she arrived yesterday.

According to Richard this afternoon, Lisa’s skin inflammation has stopped progressing. Although she is being treated with sterile dressings for the open blisters on her upper arms and chest, the rest of the blisters have not worsened and the skin between the blisters is no longer an angry red. She looks better today and appears to be resting comfortably.

Lisa has not been responding as much as she was before the rash began but the new neurologist, Dr. Hochane, feels that this is not a neurological step backwards, but rather that her healing neurons are unable to compete with the magnitude of the allergic reaction. He expects her to regain the responses she had previously shown when the inflammatory reaction subsides.

The fact that Lisa already had a trach, an IV PIC line and gastric feeding tube in place meant that she did not have to undergo any of those procedures in Phoenix. They were able to restart the ventilator to assist her respirations without effort, have ready IV access and continue her tube feeding as indicated.

Although the plan now is to get Lisa back to Tucson when she improves, Richard has embraced the opportunity for additional physicians to be become familiar with her case and add their expertise to the mix. He will also research Barrow’s Rehabilitation Hospital in Phoenix for Lisa when she progresses to that point.

On a final note, Richard has expressed on numerous occasions how much he appreciates the outpouring of support by so many folks in so many different ways. The most recent example he gave was about his discussion with a friend and police Captain from the Tucson Police Department – David Neri. As Richard was updating Captain Neri about Lisa’s prognosis yesterday afternoon and reaching out to whoever he could to find a burn unit for Lisa, Captain Neri offered to make a call. As it turns out, that call was to Dr. Len Ditmanson, the current President of the Arizona AMA Chapter and was the call that made the difference in Lisa being given a bed a the Arizona Medical Center, Burn Unit. To quote Richard: “Everybody doing everything they can is what is really making the difference for Lisa.”

If you would like to comment or have questions, please send an e-mail to mlwintory@aol.com.

Sherry Wintory

Lisa Today

11 - 12 March 2006

Oro Valley, AZ

Lisa took things easy on Saturday, and her general condition remains stable. We expect that Lisa will transfer to Kindred Hospital sometime in the coming week. The delay is from the lack of bed space in the critical care unit, rather than for medical reasons. In keeping with the good news – bad news events of life, Lisa developed a rash over night, which may be an allergic reaction to one of her new medicines. Richard discussed this with Dr. Ruffenach this afternoon, and he took her off the medicine. The appearance now of the rash may be an unseen benefit. Had the rash developed after Lisa transferred to Kindred Hospital the move might make it a variable and therefore an impediment to the diagnosis. An additional benefit is that the physician who wrote the prescription is “on campus” with convenient face-to-face access to Lisa. She received some medicine to make her more comfortable. Lisa was receiving passive, range of motion therapy from her mother this afternoon. Carmen said to her, “Lisa, I can’t raise you arm by myself, and you need to help me so you’ll be able to throw a ball to Michael.” Carmen then said she felt the weight of Lisa’s arm lighten as she moved her arm from her side to over her head. It indicated to Carmen that Lisa wanted to stay in the game…so to speak.

One of the people who get Lisa Today asked, “How is Richard holding up?” Therefore, here is my observation, and reflection on the question. Richard is receiving an outpouring of concern for Lisa, and the encouragement, and phenomenal support from their many colleagues, friends, and relatives. It has enabled him to remain at Lisa’s bedside virtually day and night since this ordeal began. We’re supporting him with meals and fresh clothes, etc., which are hand delivered to him while he is at the hospital. Michael’s care and nurturing is not a worry for Richard as he has Mimi (aka Sherry) here from Illinois and Carmen here from Oklahoma. Sherry is committed to be here for the next 3-months. You might find it interesting to know Sherry is a Family Nurse Practitioner and a professional nurse. She has 25-years of solo practice in a rural medical clinic located in Alexis, Illinois. Currently, Sherry provides mid-level medical care to patients of St. Mary Medical Center, Emergency Room in Galesburg, IL.

Richard has immersed himself in the process of understanding the "medical speak”…the language of physicians and other medical personnel. He also uses the art of persuasion with gentle forcefulness in his interactions with healthcare administrators, medical personnel, insurance officials, and others who hold the keys to provide current and future medical care and rehabilitation services for Lisa. He also makes time for the many people who visit or call by telephone to inquire about Lisa. It is obvious to me, that the loyalty and devotion he receives is from those whom he holds close to his chest.

If you would like to see the wonderful hospital where Lisa is being cared for, double click on this URL: www.nmcorovalley.com.

Many people have asked if there was anything, “they could do.” There is one thing you can do that would be helpful. Send an email to nwmc.orovalley@triadhospitals.com and let the hospital administration know you appreciate the wonderful care Lisa has and is receiving throughout her stay. It might help you to know the critical care nursing team, all shifts, has treated Lisa as a young 39-year-old mother of a newborn with the care and devotion Lisa deserves. For their outstanding conduct these nurses should be recognized, and a family, we would love for you to let administration at Northwest Medical Center know.

Michael

wintory@galesburg.net

Lisa Today

March 10, 2006

Richard received some excellent news this morning from Jessica Mills the Blue Cross-Blue Shield manager in charge of Lisa’s case. While staying to true company policy, Jessica listened to Lisa’s story, and the humanity of it moved her. The difficulty was that Blue Cross did not have a contract with the long-term critical care hospital Lisa needed. To make this fly, Blue Cross and Kindred Hospital needed to compromise in order to allow Lisa to be transferred without devastating co-pay. Devastating? You will find the definition of devastating in the dictionary under $16,200 a month. Kindred Hospital agreed to require less money, Blue Cross agreed to pay more money, and they met in the middle. Both Blue Cross and Kindred Hospital stepped up and did what was best for the patient, and the right thing. Richard said, “They are both heroes.”

This morning Lisa looked well, rested, and comfortable. She was bathed and positioned turned to her side. Two nurses turn Lisa every two hours to prevent bedsores. At 1:00 PM a pulmonologist, arrived, and reviewed Lisa’s chart. The physician thought it was time for her to breathe just the room air; so he ordered the ventilator removed. It placed in a spot near her beside. The ventilator remained in her room in the event she should become fatigued, and need assistance getting enough oxygen. Lisa retained the“trac. The trac helps her breath easier, and provides a ready access point for respiratory therapy. One of the things they do is supplement the room air for her with humidity. You see, when one breathes through the mouth and nose, humidity is created naturally. Since Lisa is breathing through the trac, she is unable to humidify herself. After the ventilator was removed, Lisa continued to breathe very well on her own. Her heart rate, oxygen level and breath rate continued to remain normal. How’s that for some encouraging news? But wait, it gets better.

During the day Lisa received small doses of morphine to neutralize some discomfort related to the surgical implant of the defibrillator yesterday. Laura, who is Richard’s sister, gave Lisa some passive range of motion therapy, and by all indications, it went well.

At the scheduled change of shift assessment, the nurse and Richard observed her to respond to slight stimulation of the hands and feet. Then, when the nurse asked her, she moved her eyes to the left, and then to the right. She did it immediately. Next the nurse said, “Lisa, move your eyes up.” She did it! Her nurse then said, “Lisa move your eyes down.” She did that too! Lisa did something new, something not asked of her before this evening… to move her eyes vertically. Yessss! It’s been a pretty good day for Lisa and for us. About this time, our thoughts turn to your prayers, and the prayers of the others you inspire and we recognize who’s doing the work here.

Michael is 1 month old today. He spent most of the day chugging milk, and sleeping. He definitely got his extra quarter ounce of milk.

Michael – wintory@galesburg.net

Lisa Today

March 9, 2006

Oro Valley, AZ

It was 9:45 AM today when Lisa was taken from her 2nd floor room in the intensive care unit. The nurse pushed Lisa’s bed down the corridor with Lisa not feeling the gentle forward motion. The nurse chose one of the two elevators for their short decent to the ground floor; after the elevator stopped and the doors opened they moved down the long corridor to the Cardiac Catheterization Lab. The surgical team was waiting. The procedure began with Lisa being prepared (preped in hospital slang) to have a defibrillator implanted into her chest. Her physician, a specialist, Dr. Decena began the process with a prick from a Novocain syringe. He intended to cause Lisa no discomfort. One would think, “Patient’s in a coma”, “the anesthetic would take effect as soon as it was applied”, and we would be on our way. Well, that’s what Dr. Decena thought, and most of us would think so too, but Lisa did something unexpected! She flinched from the skin prick. Very unexpected, and it was a surprise to the medical team! The flinch reassures us because we were told by Dr. Decena it indicated that the healing process has begun. Doctor Decena came to us in the waiting room and reassured us everything went well, Lisa is resting comfortably, and then he told us about the now famous flinch. He met with Richard separately as Richard was in another waiting area talking with Blue Cross. As the Decena was leaving, he handed Richard an Owner’s Manuel about 2 inches thick, and suggest Richard might want to familiarize with the material. That was about the only levity we had this morning.

Carmen (Lisa’s mother) and David (Lisa’s brother) went to Lisa after the implant. They were delighted to learn how well things went before and after the implant. Then Karl (Carmen’s husband) and I went to see Lisa for a very brief visit. Let me tell you Lisa look serene and peaceful. She was positioned on her right side. Lisa’s auburn hair was brushed back and flowed on to her pillow and that combined with her color made for a beautiful picture. Karl saw her beauty too. She wasn’t acting it was real, but we were standing on the outside, waiting for her to join us…. and I passionately believe someday she will.

The conversations with Blue Cross continue, they are not heated, but Richard is pressing, and seeing some cracks in their resolve. I will let you know how this ends.

I emailed PhotoShows of Lisa and Michael to several people who asked to see the pictures, and would be delighted to send you a copy for yourself, just email at wintory@galesburg.net. You will get same day service J.

I am Richard’s father, he asked that I keep you informed of Lisa’s progress. From our family to you and yours: THANK YOU! Michael

Lisa Today

March 8, 2006

Oro Valley, AZ

It's 7:00 PM Mountain Standard Tim. I'm Richard's father, Michael. Richard asked that I keep you current with Lisa's progress toward recovery.

I was asked two questions by a correspondent: Lisa age and when was Michael born. Lisa is 39-years old and a Mother by 26-days. Her first born son, Michael Gene arrived February 10, 2006. He was 9.1 OZ and 21” long. On Friday, Michael will celebrate being 1-month old with an extra ¼ ounce of Similac. Two things get his goat: hunger and baths. The rest of the time he’s in harmony with his universe. And it makes us laugh. What a guy!

Our conference with Dr. Stein (neurologist) and Ruffenach (internist) began promptly at Noon in the ICCU conference. The conference room, in case you are wondering is not a place where you would like to spend a lot of time, but the time there, for us, was well spent. You may recall this meeting was delayed, and today we learned why. The Docs had to have additional MRI pictures—beyond what was initially taken – in order to clarify and validate the extent of damage to certain parts of Lisa’s brain. You know; we wanted to know, but then again…we didn’t. Lisa is opening her eyes with increasing frequency, but Dr. Stein thinks she is unable to associate to what she may be seeing. Some of her activity is beyond his expectations. We learned her brain is working to restore function, and that is difficult work. Dr. Stein cautioned us to not press her to perform tasks, such as “open your hand” or move your foot, etc. Reason being, if she hears and understands the task request, and attempts to respond, it will overload her, and could delay the self-healing of her brain. Therefore the operative word is passive interaction in moderation. As an example, Carmen, her Mom, reads to her. The rest of us are giving her range-of-motion therapy three-times a day. We talk to Lisa and tell her about Maggie, her Sheltie, and the weather, and how good she looks, and that we love her and so on.

Sherry and I took the opportunity to visit Kindred Hospital—Tucson. It is an acute critical care, 51-bed hospital which includes an intensive care unit. This is where Lisa will soon be transferred. The hospital is accredited by the Joint Commission on Hospital Accreditation. This is the “gold standard” for a hospital’s rating. Sherry and I toured the facility. We found it to be well staffed, and maintained. The Intensive Care Unit has a patient to-nurse ratio of 2 to 1, all patients in the unit were monitored electronically (Heart Rate, Respiration, etc) by a technician whose only job was to monitor the monitors. The rooms, hallways, guest areas, cafeteria were exceptionally clean and free of odor. Guests of patients are encouraged to use the cafeteria, etc. I am convinced the quality of care that Lisa will receive at Kindred is the best available without qualification, and Sherry agrees. There is another facility in Tucson, which is actually closer to Richard’s home, but is lacks a Critical Care Unit, and was therefore ruled out. A cloud hanging over this is that Blue Cross Insurance is hassling Richard over the decision to use Kindred, but Richard is working to achieve what is best for Lisa. I expect Lisa will go to Kindred with Richard’s function as her advocate By-the-way, no one said this was easy! J

Lisa is scheduled to have the defibrillator implanted at 9:00 AM tomorrow. It will help protector her and I (if I had a vote) completely agree, but if Lisa ever finds out about all this poking, pushing, pumping that going on around her that she would be seriously looking for someone’s ass to kick!

Good Night Everyone!

Michael

wintory@galesburg.net

At 2:00 PM Richard and I were joined by Carmen, Karl and David to receive instruction on the right way to perform range of motion exercise on Lisa by a registered physical therapist.. Each of us was able to practice administering the flexing of her fingers, hands, arms, shoulders, toes, feet, ankles, and legs. Then we waited until 5:30 PM to get the results of the extended MRI and meet with Lisa’s physicians for some news. We waited in vain because additional pictures were ordered by one of the doctors, and the equipment would not be available until 7:00 PM. No Joy. (A term used by military pilots which translates loosely to “objective not seen”.


Richard discussed the plan to implant a pacemaker/defibrillator into Lisa’s chest with one of her Docs. The device has two functions first it is a pacemaker, and as you know, it will assure her of a normal heart rate. But if her heart starts fibrillating (rapidly fluttering so to speak) the defibrillator will automatically pulse an electric shock and enable the heart to do it’s job of pumping (circulating) blood properly. It’s pretty high tech, and what it indicates is; Lisa has a long life ahead of her. She is a “prospect for living.” Clinical-but-Clear! This is a lot to take in, and I give great credit to Richard and Carmen and the rest of us here for taking it in, working through the learning curve, and most important for NOT burying our heads in the sand. And hey, you too for caring, for letting us know you are there for Lisa and Richard and Michael. Hip-Hip Hooray!


Earlier in the day, Richard and Laura drove to Kindred Long Term Critical Care Hospital on the other side of Tucson to interview the staff and inspect the premises in order to determine the suitability of the facility for continuing Lisa’s care, as she will be discharged from Northwest Medical Center – Oro Valley (probably) next week. Later, David, Karl and Carmen drove out to see it for themselves. David unemotionally inspected the hospital CCU, the single patient rooms, and asked hard questions to those to whom Lisa would be dependent on for her I might mention Shelly, a friend and classmate of Lisa who is a physician also inspected the hospital and met with the administration and staff. Bottom line, it’s where Lisa will make her next stop… and probably next week. I’m driving out there with Sherry tomorrow, and I’ll give you more details afterwards. Also, once again that damn MRI briefing is gonna happen around Noon Wednesday, March 8th, 2006, but don’t bet on it.


I’ve decided to stop numbering these things; I don’t want to embarrass myself by forgetting what the heck edition is this… and Oh, Good Morning!!!!!!!!!

Lisa Today

07 March 06

Oro Valley, AZ

Good Morning

I’m Richard’s father; he asked that I keep you current with Lisa’s progress to recovery. I was thinking if I were you I’d like to know, without wondering or worrying, what’s happened overnight, and what’s going on right now.

Monday evening (2/6/2006) Sherry brought Michael to spend an hour with Lisa. As before, her heart rate increased as Michael was placed upon her chest. She seemed to close her arms around him, and there they lay together… Mother and Child… as illustrated with the Simon and Garfunkle lyrics, “Mother & Child Reunion.” Richard brought Michael home about 8:45 PM, and he returned to the hospital about 7:00 AM today.

It’s clearly Tuesday in (wish I could say Tucson) blue skies and mild temperature and Lisa went for extensive MRI testing at 8:00 AM. One of our favorite nurses, André told Richard this morning that Lisa is continuing to respond well to stimulus and that he observed more spontaneous limb movement. (This is encouraging, but I must confess I have to restrain myself from placing additional adjectives or exaggerations in my comments. So if some of this is “flat” it is because I’m trying my best to be fair to all concerned.)

So looking ahead today are Lisa’s test results (late afternoon) and hopfully a meeting with Dr. Stein her Medical Team Leader. So, standby …. Michael wintory@galesburg.net

I’m Richard’s father, Michael; this is the 3^rd installment of Lisa Today. It is Monday, March 6, 2006, but today’s update actually started late Sunday afternoon after I sent my last message. Lisa became active. I told you about Richard placing Michael onto Lisa’s chest, well last evening as soon and Michael snuggled in, Lisa’s heart rate went up from 89 to 97 and was witnessed by, not only Richard, but the nurses as well. Let me tell you Richard was really heartened by what he saw Lisa accomplish. David, Lisa’s brother, saw her raise her arm to her chest from a relaxed position beside her hip. The move was so deliberate that it startled him. David asked a nurse to verify the achievement. The nurse pinched Lisa under her arm (between her shoulder and elbow) and she immediately withdrew her arm and had a look of displeasure on her face. The nurse entered her responses into her medical record. We all really enjoyed our supper last night which was provided by Lori and Steve Bunting and daughter Kendall, and Carol and George Vetrano. High spirits and hope are abundant from the late afternoon and evening news we received from Lisa, thank G_d. I’m writing this portion at 11PM Sunday night because I wanted to capture the moment. It is exciting to sit at the dinner table and listen to the observations made by the family members who were with Lisa; because of the varying perspectives and the snapshots in time of their observation. We report what we witness, and not report wishful thinking. This is important to us all, and I’m sure you agree.

Lisa is scheduled to receive a MRI tomorrow, and I hope to be able to tell you more about it and the results.

All of the above was written last night. It’s Monday morning now the 6^th of March, people here around Richard’s house are all in their new routines, and Richard is at the hospital. At 8:30 AM, Richard called and Sherry put him on the speaker phone. He had something that he wanted us to hear the same way and at the same time. Dr. Stein, Lisa’s chief neurologist and the medical staff team leader, changed one of her prescriptions. The new meds make her nerve endings more sensitive. This morning Lisa responds to commands, i.e. Richard asks: “If you can hear me blink.” Lisa blinks. (The blink is more a squinting as her eyes do not actually open, as if the effort to open her eyes is too strenuous.) Richard asks: “If you understand me, move your eyes side to side.” Lisa moves her eyes side to side. (The eye movement is with eyes closed, but the effort can be seen as her eyeballs shift from side to side underneath her eyelids. The nurse moves Lisa’s arm across her chest and Lisa assists the nurse with the effort. She also moved her foot and her leg by herself. The nurse said, “We will not continue challenging her, because I want Dr. Stein to witness this for himself. It is important. Finally, she is breathing on her own 16 out of 20 times. The MRI is still scheduled, and in the nurses opinion enough activity on Lisa’s part suggests an additional EEG is warranted, and will mention it in her report.

Richard will ask Dr. Stein for a family conference to go over the results of Lisa’s tests. He anticipates if schedules permit we’ll meet with Dr. Stein late today or tomorrow morning.

10:30 AM Mountain Standard Time

Michael

wintory@galesburg.net

Yesterday afternoon, Richard sent his sisters shopping for gifts for the nurses. Laura and Debra prepared gift baskets for two of the nurses, and a wrapped a coffee thermos for another nurse. These three individuals have provided extraordinary care for Lisa throughout her hospitalization, and they have been extremely accommodating to our families. An example is that we’ve received their cooperation to bring Michael to visit Lisa every evening for an hour. He is placed on Lisa’s chest and snuggles up close and tight, just like you would expect of him and Lisa together.

Lisa remains in a coma. Laura told me this afternoon, she appears to be in a “sleep state,” in that she is more still as if resting. Laura made this observation based upon Lisa’s has decreased the frequency of opening her eyes. This is not a trend, I’m sure; I mention it because it is a very slow news day with respect to new information about Lisa.

Richard and Lisa’s parents, Carmen and Carl, and her brother, David are at the hospital with Lisa; as is Laura. Sherry is taking care of Michael with assistance from Tracy Miller. Sherry, Tracy and Michael are off to Costco’s baby stroller shopping this afternoon. Michael got a bath, shampoo, and a fresh change of cloths before they took off. I’d love to report that Michael loved his bath, but to be truthful he thoroughly exercised his lungs to the fullest capacity to protest the bath. Maybe he’s really a kitten… just kidding…

That’s it for now, if you have a question for any of us, please let me know.

Your prayers and well wishes have been and are sincerely meaningful to us all.

Michael
wintory@galesburg.net

I'm Richard's father, Michael. He asked that I keep you informed of Lisa’s medical condition, and other incidental news of interest with Michael Gene.

Today, 04 MAR 06 as of 1PM, Lisa remains in a coma; her condition is stable and without remarkable change. She continues to periodically open her eyes. The breathing tube, feeding tube, and medication port was replaced with a tracheotomy, a PIK, and a feeding port. The three replacements will make her more comfortable, be less stressful, and better enable the administration of her care. Occupational therapy began Wednesday. From the medical staff, we learned that Lisa will be transferred to a long-term-care facility, if after one or two-weeks if her condition is not improved; the reason being Lisa is no longer critical.

Sherry, my wife, and Carmen (Lisa's Mother) took Michael for a pediatric, well-baby check, and though we all knew it, he's doing great and eating well... very well.

If you know of others to whom I should include with updates, please forward me their email address.

Cordially,



-mlw

wintory@galesburg.net

Lisa had a trach tube inserted yesterday (March 1).

Hello all!

Check here for updates on Lisa's condition.