The Beginning of a Nightmare: My Wife’s Stroke

Discovering My Wife Was in the Midst of a Stroke

My Wife and I are in love with one in other and our life together was that of two newlyweds that adore each other. I never thought my wife would have a major medical event, and figured, if either of us did, it would be me. I’ve planned financially for my Wife’s welfare should I have a heart attack, stroke, etc. I never saw my Wife’s stroke coming until on a Thursday night, after calling her from work late in the afternoon to see how she was doing, receiving no answer from her on her cell phone, I arrived home at approximately 5 pm to find my wife lying in our bed, face up, with a snoring, gurgling sound coming from her mouth, and a white powdery substance (I assumed was a pain reliever such as Advil, or Ibuprofen) running down either side of her mouth, her eyes open, glassy, and distant.

I knew something was wrong as I left work that day, driving as fast as possible and rushing home in heavy traffic. Once home, I entered our house through the garage into an eerie and quite house. Our dog, Holly, was no where to be found. I quickly went from the garage making my way to the master bedroom at the other end of the house, I found my wife in a state I have never seen before. Holly, our dog, was sitting beside the bed as if she thought her best friend was going to get up at any minute. I immediately called 911 to get help

The conversation with the 911 operator started with me giving my name, our address, and the nature of the emergency as I have been taught. The operator was direct, asking me to describe my Wife’s appearance, questioning me about possible drug overdose, choking, heart attack, or other signs of distress. He had me check my Wife’s airway for obstruction(s) (I knew she was still alive, or at least assumed so, when her eyes seemed to recognize me pushing me away with her hand as if she were annoyed by me actions). I told the operator that there was no way my Wife would purposely take an overdose or do harm to herself. Unaffected by my assurance, the operator had me look for all medications she was taking, which I did and reported. I also mentioned that we had a Dog in the house after I asked how far out the first respondents were. I was instructed to let the Holly out into the backyard, and unlock the front door for the ERT to enter the house.

How Shall We Log This Call?

The 911 ERTs did what I would consider standard operating procedure; blood pressure, try to get the patient to respond, etc. I kept wondering if I was losing the love of my life, and had no idea what was going on with her condition. I did not take offense to questions about her state of mind, if she took drugs, if she was depressed, etc. After what seemed like an eternity, I was told she was to be transported to the hospital. My Wife was whisked off to the ambulance while I was waiting for the remaining ERT team to exit the house. My last memory of the ERT experience was a comment between two of the team members, “How shall we log this call – stroke?”. The response was “yeah”.

Triage Room at the Presbyterian Hospital Emergency Room

The first stop was the Emergency room of the Downtown Presbyterian Hospital in Albuquerque, NM where we live. I drove like a mad man to get around traffic snarled by highway construction to get to the Hospital ER. I was greeted by one member of the ERT team and was led down a hall to just outside a room where the medical staff was fighting to diagnose and stabilize my Wife. At one point, the Doctor came outside the room to get my permission to intubate my Wife and inquire about a DNR (Do Not Resuscitate) on record. I informed the Doctor that we did have a DNR on record but gave my permission to resuscitate my Wife. At this point, I wanted to give my Wife every opportunity to recover. By the way, if you don’t have a will, medical directive, and medical power of attorney, you need to do so. Consider situations such as this (stroke, heart attack, etc.) and specify your wishes should you be faced with those conditions.

While waiting for news on my Wife’s condition, I called her kids, my Sister and Brother-in-law, and informed them of the situation. My Sister, Brother-in-law, and one close neighbor arrived to offer support. The events that unfolded were very hectic. Nurses entering and exiting the triage room were clearly fighting for my Wife’s life. The Doctor came out to asked more questions, inform me that my Wife had a dual brain bleed (left and right hemispheres), may have pneumonia, and returned to the Triage room to continue saving my Wife. Finally, the Doctor came out to allow us (my Sister, Brother-in-law, and I) into the room to see my Wife. My wife was intubated , unconscious, and frail. The Doctor informed me that there were no available Neurosurgeons or hospital beds available in Albuquerque, and that he was consulting with another Doctor (a neurosurgeon that was a friend of his in another state). while searching the surrounding area (Denver, Texas) for a hospital with a Neurosurgeon and bed. After 20 minutes or so, we were informed that my Wife would be transported to the University Medical Center at Texas Tech in Lubbock, Texas. Within 5 minutes of being informed about UMC, we were whisked away by ambulance to the airport and flow by the UNMH emergency air transport to Lubbock, TX.

The flight to Lubbock lasted about 1-1/2 hours. Once we landed, my Wife was taken to UMC. As I recall, it was 1:30 am in the morning. My Wife was then taken via ambulance to the UMC Neurosurgery section and given a room in the ICU.

Your Wife Experienced a Serious Medical Condition – Intracranial Hemorrhage of the Right and Left Hemispheres of Her Brain

When we arrived at the UMC ICU and my Wife had been initially examined (The CAT Scans and x-rays images were provided via DVD-ROM by Presbyterian Hospital ) I met with the attending Neurosurgeon PA about my Wife’s status. I was informed that there was nothing the Neurosurgeon could do with respect to operating as a brain bleed is not, necessarily, operable. My Wife, at that point apparently, would be attended to by the Neurology specialists. The ICU had two Doctors that alternated weeks and shift. Both Doctors (Dr. Latchmansing and Dr. Philips) were excellent. I have never seen and ICU (and I have seen a few with other family members) where the staff and attending Physicians were so accommodating and thorough. The nursing staff was also the best I have ever seen. I am fortunate that I work for a Company that cares about the employees but is also accommodating in emergency situations such as my Wife’s. I mention this because I have been at my Wife’s side every step of the way, sleeping in the ICU, the Hospital, and presently in Rehab; more on the Hospital and Rehab later. I have witnessed all of my Wife’s care, 24/7, shift-to-shift coordination (pass down efficiency and hospital protocols in particular) , the bedside manor each Nurse and Nurse Aide has, physical handling, and facility cleanliness. As an Engineer, and specifically an Engineer who is highly training in Systems, I was able to note how each facility carries out medical care and the mistakes that are so obvious that I don’t understand that someone in my Wife’s condition would possibly survive without an advocate vigilant enough to go to the CEO of a facility if conditions warrant. But I digress, more on this later. My Wife is the Love of my life, the woman of my dreams, so, the care she receives must be the best. On this account, I believe that the UMC ICU met what I would consider the best care my Wife could receive.

Living in the ICU – UMC’s ICU

Prior to being flown to UMC in Lubbock, TX, I called all of My Wife’s immediate family; Sister, Brother-in-law, her Son and Daughter (All were either living out of town or on vacation). All wanted to come immediately to Lubbock because, as at this point, we had no idea if my Wife would survive major brain trauma, or, if she did survive, what the prognosis for quality of life would be. My Sister and Brother-in-law left a Cruise to be with us. My Wife’s kid’s flew into Albuquerque to stay, to meet with my Sister and Husband to gather what they could to bring to Lubbock (clothing, computers, etc.) as all I had was the clothing on my back and my wallet. My Wife literally had a hospital gown and that was all. Fortunately, we have a wonderful family (and neighbors – more on that later) and life in the ICU, although very difficult to sleep in, was tolerable. After all, it was about my Wife care and recovery, not my comfort. UMC Neurology ICU, as I understand, is new (build about 2 year ago?), has large rooms, and a char that folded out into a bed. It is not the most comfortable sleeping platform, but not horrible. The Nurses carry on their activities, and are very considerate of a family member staying in the room. Most every Nurse was spectacular, and I don’t want to forget any of them, but there are a few in particular that deserve honorable mentions Trey, Gayle, Chris, Nailah, Brittney as well as the Respiratory Technicians, Robert, Tim, and Megan (a “Traveler”) provided above and beyond care for my Wife. There were a few moments that left me wondering but not worth swelling on as my Wife was able to move on the the next level of care, “The Floor”.

The Floor – UMC’s Hospital

The “Floor” (A.K.A. “Production” by UMC Staff Members) is what I know as “the Hospital”). I was told that my Wife was too well to remain in the ICU and needed to be transferred to the “Floor”. I’m not sure of the ratio of Nurse to Patients in the ICU (I’d guess 4 or 5); the floor seems to be double or triple the ICU. I found that the ICU had a few “bad apples” where are the “Floor” wasn’t quite triple that of the ICU in bad apples. The bad apples come in several flavors; those that are new to Nursing, those that are burnt out, and those that are Nurses for a job. The best Nurses are old school, or have the gift of compassion with the intent to help people suffering. The ICU had 2 great old school nurses “Gayle” was my favorite, I think the other was “Susan”, a friend of Gayle. The other great Nurses I mentioned above. Here, on the floor, there were no nurses that stood out as spectacular but there were professional staffing with only one or two that I would, personally, seed out. Other than that, the UMC “Floor” was what I would consider among the best Hospitals I’ve been in. Again, I was with my wife 24/7, from the start. Another think I noticed is that the “Floor” is clearly not as well funded as the ICU. We had discontinuity between the way the ICU repertory team managed my Wife’s incubation than the “Floor”. I think it has to do with inconsistent protocols between the two areas, but was clearly inconsistent between the repertory team that served the floor. Specifically, the use of “wet”, heated oxygen, verses cold dry oxygen. When my Wife was transferred from the ICU to the “Floor”, there was no apparent coordination on the fact that my Wife had 33 C wet oxygen and the “Floor” repertory team wet straight for the cold, dry oxygen and my Wife struggled. She coughed more, and had much more intubation induced mucus. I would not get the repertory team to understand and finally had to call the ICU and ask for help. The ICU charge Nurse (I think it was Brittney” immediately came down, and resolved the issues. This is an example of why you must be vigilant as a patient’s advocate. When I get to the rehab discussion of my Wife’s care, I will have plenty to say about being vigilant!

After, roughly a week in the “UMC” floor, my “Wife” the attending Physician told us that she needed to get into rehab as soon as possible. When a patient is in bed for long periods (about 3 weeks at this point) the mussels of the body degrade due to lack of use and this can be permanent if not attended to (as I was told). So, the Social Worker, Linda, came to the room, and we had a discussion about the next steps.

Pick Your Rehabilitation Facility Carefully!

It is very important to consider the rehabilitation facility you choose for yourself or a loved one. This can make all the difference in the world. Unfortunately, you may not have time to research all facilities available to you when it comes time to consider where to go, or where to send a loved one. When a hospital is ready to discharge a patient, you will most likely be visited by a Social Worker the day of discharge and be presented with a list that is probably out of date and asked to “pick one”. This is probably one of the most sad and frustrating aspects of patient advocacy. Based on past experience, Social Workers are one of the worst parts of the patient care. Not that the role of a Social Worker is not important. Rather, not all Social Workers have the the time to give you or your loved one to make the right decision. Especially if you are from out of town – this is the situation for my Wife and I. Bear with me on the following; I am a little wordy, but would like to give you all the information I wish I had then, but learned the hard way.

While deciding where to send my wife next facility for care, I started by investigating the next step early on in the UMC ICU. I asked for advice from the attending Physicians and was told, “The Social Worker” handles all that. I realize that there is a team of professionals that care for a patient, but it became clear to me that the Doctors wanted nothing to do with helping the family determine the next step. Their job is apparently to “fix” the patient, and leave it to Social Workers to sort the rest out. At that point, It was not clear to me where my Wife should go after the ICU, so I contacted the UMC ICU Social Worker, Thea. Thea was very helpful, but to a limited extent. I discovered that Social Workers are pulled in many directions. They do not have the time to do your homework, especially when you are from out of town. They also do not know the intricacies of your insurance policies. In Thea’s case, I wanted to get my Wife back to our home town, Albuquerque. I discussed the desire of getting back to Albuquerque and Thea, gave Thea a list of two possibilities Kindred, and The University of New Mexico Hospital (UNMH). Kindred was based on a personal recommendation. UNMH was a guess as I don’t believe Presbyterian Hospital has a in patient rehabilitation facility specializing in stroke patients. I was guessing that UNMH might. Unfortunately, UNMH, aside from being very unfriendly to requests for information, apparently does not accept UHC (United Health Care) insurance and does not respond to requests. Most of my attempts to be proactive when in the UMC ICU lead to dead ends.

Soon after my Wife was considered to be healthy enough to be discharged from the ICU, she transferred to the UMC “Floor”. We could have laterally transferred my Wife back to Albuquerque, but I was not confident that there was a hospital that was better than UMC. UMC is noted for their expertise in Stroke patients, and I am told, it one of the best in the country. My Wive was assigned a new Social Worker, Diane. I was tempted to continue my discussion with the ICU Social Worker, but felt comfortable with the “Floor” Social Worker. Based on the recommendation of the “Floor” Social Worker, I chose TrustPoint Rehabilitation Hospital of Lubbock, Texas. The decision was based on a visit to TrustPoint, and prior experience with facilities in Albuquerque. Unfortunately, I did not have enough information or experience dealing with the levels of care and the specific considerations. Not only the levels of care, but how the Health Insurance company determines what level of care is appropriate and the patient has no rights and nearly no say so with what the insurance company decides. The decisions are all made between Doctors, Nurses, and Social Workers – some that have never even seen the patient and rely on reports that are hastily produced. So, my decision was based on instinct, desire to send my wife to a facility that was noted for their expertise, and the ability to remain with her as her advocate.

Living in a Rehabilitation Hospital – TrustPoint Rehabilitation Hospital of Lubbock, Texas

TrustPoint Rehabilitation Hospital of Lubbock Texas is an outgrowth, as I understand it, from Dr. Lester E. Wolcott, MD, originally started as “The Lester E. Wolcott, MD Rehabilitation Center”. My knowledge of the complete history of TrustPoint is limited. Suffice it to say that ” The Lester E. Wolcott, MD Rehabilitation Center” has morphed into “a member of a larger network of rehabilitation and long-term acute care hospitals through Ernest Health, but are managed locally to best meet the needs of our own community”

TrustPoint, as probably true for most long-term acute care facilities, has two major components: Nursing and Rehabilitation (occupational, physical, and speech therapy. On the web sites of most of the facilities I have visited, and that of Google reviews, you will find a spectrum of praise and complements from patients positive and negative. I tend to focus on the independent sites for reviews (e.g. Google). This is because it is very hard to judge how transparent the facility run web sites are. I also do not subscribe to Facebook. That said, I cannot comment on other facilities as I will on TrustPoint as I have no experience with other facilities. I will day, that in reading reviews on Google about TrustPoint, I can identity with many of the reviews. Here is my observations about how and acute patient recovering from a stroke was treated broken down into 4 areas: Rehabilitation, Nursing, Maintenance, and Food Services.

You should be aware, when reading reviews, that depending on the level of need (primarily Nursing and Therapy) and the length of the stay of the Patient), the reviews tend to vary. The longer you stay (in my experience) the

In general, here is how I rate TrustPoint on the above areas (1 star is poor, 5 stars is excellent):

Therapy: *****
Nursing: **
Maintenance: *****
Food Services: ****

Therapy

After approximately two months living in a Patient Room with my wife, and attending nearly all therapy sessions with my wife, I have nothing but praise for the therapy group. They are professional, , accommodating, and skilled. In the two months I have been with my Wife at TrustPoint, they have taken my wife from someone that spent about three weeks in bed to nearly walking. That is, unfortunately, in this day and age Insurance companies (UHC in this case) authorize rehabilitation stays based on FIM scores. The goal of TrustPoint is to send Patients home. Unfortunately, for my Wife and I, we will be moving to the next level of care of Skilled Nursing. It was not clearly communicated to me the exact reasons for Insurance limiting my Wife’s stay; I assume that her FIM scores did not meet their expectations, but knowing why exactly would have been nice. I did not ding Therapy for this because, my understanding, is that the report to the Insurance company is a group compilation that the patient and patient’s family are allowed to attend. I asked to be present to understand what the issue(s) were and was denied access. In summary, the Patient has no rights in this process, apparently. My wife was taken care of by three Therapists, Josh (PT), Courtney(OT), and Susan (ST). I can’t tell you how much my Wife benefited from the Therapy given by these individuals. I should also mention the Technicians in the Therapy group. The Technicians that I met were professional, courteous, helpful, and fun.

Nursing

In short, my experience with the Nursing staff was less than desirable. The Nursing component is full of drama. To be fair, there are some fantastic nurses aides and some very good Nurses. I felt that the issues we had of the Nursing group (on the “floor” that my Wife was assigned lies with middle management. As a Patient advocate and an advocate for my Wife’s care, I do not take no for an answer. If I am given, what I feel, a reasonable, professional, response, I pursue an issue until it is resolved. In the case of my Wife’s care at TrustPoint, I was at odds with two a handful of individuals that either were snarky, flippant, or highly unprofessional. I raised the issues with their Manager and never received a plan to resolve issues. At one point, while reading the team notes used to discuss my Wife’s care, I found cut and paste from two weeks notes that I felt were flat out wrong. I was concerned that, because the Insurance Company had access to this information, this could be why they were limiting my Wife’s stay. I raised this issue to the Nurse Manager explaining that I felt the cut and paste needed to be accurate. The discussion ended up turning into a defensive and accusatory in nature. I felt a skilled Manager should have the temperament to diffuse, and not escalate discussions. It should be noted that in some of the Google reviews I’ve read on the topic of Nursing were negative as well. I also noted that the Nursing Department head, John Pasonsons, as well as the CEO, Craig Bragg

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