LOOKING FOR THE NEW NORMAL
January 20, 2015
I. The Call
May 21, 2013 was a Tuesday which started out like any other day for me in the office after a trial. On Monday I had finished a trial for the executor of the estate of a long time client who had loaned a local ne’er-do-well $50,000. We had found a promissory note but the deadbeat claimed that he had paid the money back two days before my client died. At that time he claimed they had a long conversation and that he had left $50,000 on the kitchen table in one pile. A major problem with his story–not the only one–was that the in-home hospice records confirmed that my client could be aroused only by painful stimulus at this time and was hardly very chatty on the day in question. The trial had gone well and I was preparing to spend my day digging through files on my desk. At 9:20 I received the call.
A paraeducator at Kittrell Elementary School called and asked if I could come over right away. Something was wrong with Beth. She had come in a little late and had parked her van across two parking spots in the parking lot. She said she was fine but was having problems finding her words and the staff was worried. I left right away and went directly to her school which is only about ten blocks away from my office.
When I arrived at Beth’s classroom Principal Green had Beth in a wheelchair and all of the children had been taken to another teacher’s classroom. Beth was arguing that she was just fine and objecting to all the fuss and bother about her. She did mention to me however that her right hand seemed tingly and soon she said her right leg felt heavy. The Waterloo Fire Department EMTs had been called and upon arrival they immediately assessed a possible stroke. They recommended that Beth be taken by ambulance to the Allen Memorial Hospital since the neurological services there were the best in town plus their emergency department was new and state of the art. Beth was placed on a gurney and while she was plenty scared she also knew she was in good hands and that I was right behind her. Before Beth was taken on the hospital gurney through the school the principal had announced to all teachers to keep all of the children in their classrooms until further notice. As Beth left the school there was not a sound in the hallways.
I followed the ambulance and arrived and at the hospital maybe ten minutes behind them. The Allen Hospital Emergency Department has rooms consisting of three walls with a curtain facing the hallway. As I tried to find Beth’s cubicle a nurse asked if I was there for Beth Kirk and then took me aside. I have dealt with a lot of healthcare providers in my 40 years as a lawyer and I immediately sensed that this nurse was in charge and in full stride. He advised that a CT had been given before Beth was even off of the ambulance gurney. The radiologist immediately diagnosed a massive bleed in the left hemisphere of Beth’s brain. No one knew if it was progressing or not. He said the condition was far beyond the “capability of this institution to handle” and for this reason an air ambulance had been called for transport to University of Iowa Hospitals and Clinics. They had already placed a call to UIHC and the on call neurosurgeon was then giving instructions to the Allen Hospitalist. The nurse advised I could see Beth in a minute as they were removing jewelry and giving her some sedation. He asked if I had any questions. Once in a great while there is nothing left to say and this was one of those times. I knew that the wheels had been set in motion and that I was simply along for the ride.
I called my step daughter Brenna and she met me at the Allen ED. I called my step son Justin who called the family and went to be with Beth’s mother and other family members.We were with Beth for about fifteen minutes before the air ambulance crew arrived. Beth knew she was in trouble. Her speech was now very labored and her right side was almost completely paralyzed. Her eyes were wide open and she was scared. We could not take away that fear but tried to comfort her as best we could. She looked at me and said “what” and then repeated “what, what”. Her voice then trailed off. We told her that we suspected she was having a stroke and she was going to go to Iowa City for treatment. I can never forget the next words from her which were the last she was to speak for many weeks. . . “No! Fuck No! Fuck!” By this point the sedation was starting to take effect and the air ambulance crew arrived. They tried to speak with Beth but at this point she could not respond. Beth’s speech was lost within thirty minutes. The ambulance crew intubated her for the flight stating “it’s easier to do it here than in the air.” Hard to argue with that logic.
The helicopter pad is across Dale Street from the Allen ED entrance. Beth was loaded as and we stood together and watched the helicopter take off for UIHC. Our trust was in the hands of those air ambulance personnel who would try to keep Beth alive for the next 25 minutes as well as the UIHC doctors who waited for her.
When I arrived at the neurosurgery floor the diagnosis had been made: intracerebral hemorrhage. Brenna had arrived before me and learned that the situation was very grave and that Beth would probably die within the next thirty minutes if an emergency surgery was not performed. Consent was given and the surgeons performed a left craniectomy with hematoma evacuation. We later learned that before the surgery the midline shift of Beth’s brain was 10 millimeters which was reduced to 4 millimeters after the surgery. The surgeons found no evidence of a bleeding site and no evidence of any clot formation. The mass removed was measured at 86x51 millimeters.
Following her surgery Beth went to the neurosurgical post op floor affectionately known as 6 JC West. She required a mechanical ventilator and was heavily sedated. Even with the sedation, there was almost constant thrashing and flailing of her left arm and leg. The right side of course remained silent. The tricky thing about post op care with a neurological patient like Beth is the need for frequent and ongoing neurological assessments by the nursing staff and physicians. For this reason, Beth was kept on the edge of sedation so the personnel could see what was going on. For the first three days the thrashing continued in a wild manner. She would try to pull the ventilator out and destroy the numerous IV lines running to her body. For a time a mitten and restraint was required on her left arm. Her left leg was also restrained. As you might imagine, such restraint only made her flail and thrash even more violently.
I learned a lot watching Beth and watching the neurosurgical care team. I learned that the staff neurosurgeons and a gaggle of residents made rounds at 5:30 a.m. If you wanted to speak with them that was the time. I learned that her ceaseless flailing was referred to by the staff as “the jitters–they all do it.” While there was a certain amount of relief in knowing that this was a somewhat expected result it did little to comfort us seeing her in such distress. I also learned that Propofol is a wonderful medication. Once administered it calms the muscles almost immediately but doesn’t affect respiration. When Propofol is discontinued the muscle function returns in a matter of minutes so that the neurological status can be assessed. Before this drug both the patients and staff would wear themselves out from the constant flailing and thrashing until the patient either improved or died.
I learned there is a certain comaraderie among family members whose loved ones are neurosurgical post op at 6 JC West. Across the hall from the patient area is a large common area where families may stay. The chairs are ingeniously designed to fold out into sort of a bed which when made up with sheet provided by the hospital becomes a very serviceable sleeping area. There are all manner of people in the waiting room. One young woman had a husband who had been in post op for several weeks. She appeared to be running on vapor fumes and I saw no one around to comfort her. The son of one family was in the bay next to Beth. If possible he was doing worse than her. His injuries were from a motorcycle accident (no helmet) and his recovery was apparently complicated by meth withdrawal. One night a family came in at about 3:00 a.m. talking very excitedly in what I’m sure they thought were hushed tones. Not so. Their family member was undergoing surgery and everyone present understood their anxiety. We stayed there for four nights. The staff wanted someone to be present as often as possible for consultation if something occurred during the evening hours. Those were some long hours either at Beth’s bedside or sleeping on a makeshift chair. Nowhere was the family more needed however.
After a few days Beth was moved to the ICU ward and her outlook gradually improved. The thrashing calmed. She slept almost constantly and was moderately sedated. Her respirations were still supported by a ventilator. We knew she would not die from the stroke but the extent of her recovery was completely unknown.
One of the first problems in ICU was weaning Beth from her ventilator as she could not protect her airway. To remove the ventilator while she could not protect her airway is to invite aspiration of saliva into the lungs which can result in a possibly fatal condition. Not being able to protect her airway meant a tracheostomy to the neurosurgeons. For them this was a simple measure which would make the patient care much more predictable and easier. Another thing I learned is that in the ICU the neurosurgeons are certainly free to make their orders but the ICU staff physicians implement those orders as they see fit. The orders to install a tracheostomy were given on the Friday before Memorial Day 2013. If at all possible I wanted to avoid a scar on Beth’s throat. I discussed my concern with ICU staff physician Dr. Debra Szeluga. Dr. Szeluga is a squat, strong and fearless physician who said she would prefer to do the trach with her “A” team on board. The problem as she saw it was that her “A” team would not be around until the Tuesday after Memorial Day. She stated that of course if an emergency arose they could react but if none occurred until Tuesday we’d be just fine. Over that long Memorial Day weekend physicians continued to examine Beth until one said “Hey I’ve got a gag reflex”. That was quickly confirmed by a colleague and as slick as anything the ventilator tube was disconnected and the breathing tube removed with a single not too gentle pull. Beth was breathing on her own and protecting her own airway. I cried at such a simple and wonderful thing. I could never catch up with Dr. Szeluga to thank her as she was always engaged with and surrounded by numerous residents where ever she appeared. I am sure she is not always right but with Beth her artful delay prevented a permanent scar.
During the post operative and ICU phases of Beth’s recovery she was fed through a nasal gastric tube which at best is intended for short term use. It becomes uncomfortable for the patient and the volume and type of nutrients it can handle is limited. While Beth was able to protect her airway she did not yet have a robust swallowing reflex and there was always the fear of gagging on any type of food product. For this reason her physicians elected to proceed with a stomach feeding tube. While this seems straightforward enough it wasn’t for the reason that Beth had previously had a gastric bypass which greatly reduced the size of her stomach and also reduced the target for the tube insertion. Another complicating issue was the fact that Beth had undergone surgery to repair a ventral hernia a couple of years earlier resulting in a steel mesh covering the front of her stomach and small intestine. After much discussion and debate a clever group of surgeons decided they could do a somewhat lateral approach avoiding the wire mesh and go into the jejunum which is the second part of the small intestine. The drawback of the jejunum tube is that digestion is compromised and the volume that can be taken at any one time is limited. The benefit was that the nasal gastric tube could be eliminated much to Beth’s relief. The food product introduced through the J Tube was a delightful concoction sold under the trade name of Jevity. While it’s pretty funky looking stuff it sustained body and soul for Beth for the next several months.
The intensive care unit does not rehabilitate rather they stabilize and evaluate. I interviewed several rehabilitation options in the early days of June 2013. All were fine facilities but the family wanted to get Beth home to the Cedar Valley if at all possible. To be accepted at Covenant Medical Center Rehabilitation Unit a patient has to be able to demonstrate the ability to follow directions and swallow. To swallow means to protect the airway and Beth could do that. Following directions was another matter however. In those days Beth’s responses to a question or command were often random and seldom correct. The nurse evaluator from Covenant Rehabilitation was visiting with Beth and putting her through her paces to see if she would qualify for admission. One of the commands to illustrate following directions was to stick out her tongue. Beth opened her mouth a bit and it sure appeared that her tongue came out in response to the command. This from a woman who two weeks earlier was running a room full of behavior challenged K-2 graders in a special education classroom. Anyway, the Covenant nurse and I declared victory and noted that Beth could follow directions. In the week it took to get admission to Covenant Rehabilitation Beth improved but on that day it was a close question and one on which I was pleased to get the benefit of the doubt.
II. Covenant Medical Center Rehabilitation
The task of Covenant Rehabilitation was to work with a lady suffering near complete aphasia with dense paralysis of her entire right side with continuing cognitive problems. Beth was also very restless and would roll out of her bed if left unattended. Dr. Rozek and the staff at Covenant Rehab began occupational, speech and physical therapy on the very first day. They worked with Beth on her personal hygiene, reacquainting her with the hairbrush and toothbrush. Beth’s restlessness continued and despite her paralysis she would roll out of bed. She was moved to a bed positioned on the floor to minimize injury if she rolled out during the evening. For about three weeks either I or another family member would stay with her every evening. Bedtime was about 8:00 p.m. and the evening was punctuated by several nursing checks as well as periodic nightmare like outbursts from Beth. It was as if she were having night terrors. With hugs and reassurance the night terrors would pass and gradually she processed out of this phase of her recovery.
Initially, Beth’s speech improved dramatically much to the amazement of Dr. Rozek and the Covenant speech therapist. Beth worked with flash cards and picture identification and her speech was progressing in a splendid fashion until early August 2013. At that time for no known reason Beth’s speech began to become sluggish and less distinct. Within a matter of ten days her speech had gone from coherent, intelligible expression to virtually nothing. Everyone sought an answer and none was forthcoming. Dr. Rozek changed medications deleting some and adding others in an effort to see if there was a medication basis for this decline in Beth’s speech. Frankly nothing seemed to help and from September through November 2013 it appeared as if Beth’s early wondrous strides in speech recovery were going to be lost. Needless to say, this was a terribly disheartening setback for everyone.
After the first three weeks I no longer had to stay with Beth during the evening. She was comfortable and enjoyed her therapy. The staff became like an extended family and the routine seemed somewhat normal. But as with so much of Beth’s ordeal, whatever appeared to be normal would not last. In the case of Covenant Rehabilitation her health insurance carrier decided that she was no longer making progress but was rather in a maintenance mode of treatment. For this reason, they required that she be moved from the hospital rehabilitation to a different rehabilitation facility. We knew this day was coming and we spoke with Beth about it on many occasions. I don’t know whether she understood or just chose to ignore the inevitable. When the time came Beth was terrified by the prospect of moving to yet another rehabilitation facility. I’m sure she felt betrayed and was scared to death. It took several hours for Beth to accept the inevitable. On the day of the move however she was not a happy camper.
III. NewAldaya Lifescapes
During the summer months while Beth was undergoing her rehabilitation at Covenant I searched for rehabilitation alternatives in the Cedar Valley. We are fortunate to have many fine facilities and I settled upon NewAldaya Lifescapes formerly the Cedar Falls Lutheran Home, 7511 University Avenue, Cedar Falls, Iowa. Their rehabilitation facility was not new but the equipment was very serviceable and the staff seemed to be committed and very approachable. On the first day she was there one of the therapists came to Beth and refit her in a different wheelchair and spent a lot of extra time, making Beth feel welcome. She had a private room in the rehabilitation wing at the facility and they worked with Beth daily in terms of speech and a continuation of her therapies. Soon Beth was walking with a brace and the assistance of a staff person. Considering where she had been a few short weeks earlier this was truly a milestone.
During Beth’s surgery the skull was removed from the left side of her head. As a result the left side of her head was concave and her brain not protected by anything but skin. This condition forced Beth to wear a helmet when she was up and about. The grandchildren decorated the helmet with all kinds of jewels and sequins and it was quite a sight to behold. While Beth did not appreciate being required to wear a helmet it was part of the new normal and she accepted it since there were really no alternatives for her own safety.
Speech continued to be a problem throughout the fall of 2013. The therapist introduced Beth to an interactive computer tablet. The screen would display subjects which she could select. Within each subject would then be certain detailed responses from which she could choose. As an example, one application displayed all of the grandchildren with prearranged questions for each of them. Beth would not be able to speak but would tap on the computer screen choosing the application she wanted and then the computer voice would ask the questions. Through a combination of symbols and pictures it gave her the means of some self expression.
Beth was seen by her neurosurgeons at UIHC on several occasions and everything was progressing nicely. Continued CTs of the brain showed that the healing process was complete and the basic neurological structures were intact. Beth had lost a lot of brain tissue however which was to be expected given the severity of her stroke. In late October Dr. Matthew Howard noticed a shift of the midline of her brain which he was not entirely satisfied with. Thinking that this was possibly part of the cause of Beth’s aphasia they elected to repair the craniotomy which would restore a normal dimension to Beth’s skull and eliminate the need for the helmet. She was delighted with this prospect and wanted to proceed with the restorative surgery. I’ll never forget the informed consent given by Dr. Howard. It was pretty brief and to the point and essentially said that this was a simple procedure and they very seldom had any complications. If there was a complication however he stated it could be catastrophic but he wasn’t worried about it. Beth and I looked at each other and decided that if he wasn’t worried about it why should we worry about it so we elected to proceed. Instead of using the bone flap which had been removed in May, the surgeons elected to fabricate a titanium flap using 3D dimensional models from the CT of Beth’s skull. The surgery went off without a hitch and Beth was extremely pleased as her appearance started returning to normal.
Unfortunately, the speech did not return to normal and we continued to muddle through with hand gestures and signs and grins and grimaces and a little artful guessing at what she was intending to express. We assumed that this would be our new normal and did as best we could.
On Sunday November 23, 2013 Brenna was with her mother when Beth suffered a grand mal seizure. It lasted for a few minutes and was a new development. Beth was taken to Covenant Medical Center. The seizures were soon stabilized but it was obvious that further evaluation was necessary since this was not normal. As things turned out, it was extremely fortunate that no neurologist at Covenant Medical Center was available for consultation and would not be so until after Thanksgiving. A prompt referral was made to UIHC where Beth went to 6 JC East for neurological evaluation. It was discovered that Beth was suffering from ongoing seizures and that the seizures were quite possibly a source of her aphasia. Medication was administered and Beth was discharged back to NewAldaya the day before Thanksgiving 2013.
Within a matter of days we noticed an improvement in Beth’s speech. To have some improvement after such a long period of aphasia was heartening for everybody. One day before Christmas I went into Beth’s room where she was working with Sara Oltrogge, the NewAldaya speech therapist. They had put aside the interactive computer and Sara was working with Beth on various flash cards and pictures to test her vocal ability. Beth was doing quite well. I wondered if this would be the new normal. I remember looking at Sara stating “she is doing really good isn’t she.” Sara turned to me and said “I very seldom get to see somebody who makes such a drastic improvement in so short a time. It’s amazing.” That was one of the best days we had on our search for the new normal.
This enthusiasm was tempered however by ongoing physical problems. Beth developed pain and discomfort in her lower extremities in late December 2013. She was having more trouble swallowing and in general was not feeling well at all. An ultrasound was ordered which revealed a large clot in her right leg, basically from the calf to the thigh. Appropriate anticoagulant therapy was introduced and Dr. Karmini placed a filter in the vena cava so that if a clot did break loose the damage would be minimized.
Janaury, February, and March were spent with minimal physical therapy since Beth had apparently reached the maximum physical improvement that could be expected. She was still relying upon tube feedings with the Jevity solution. Her swallowing was stronger and bit by bit her speech continued to improve as her swallowing improved.
I knew more could be done for the speech but was not sure where to go. I talked with Judy Harrington, a retired professor at the Department of Speech Pathology at the University of Northern Iowa. Judy put in a good word and gave me direction and Beth had an evaluation in April 2014 at the Roy Eblen Speech and Hearing Clinic at UNI. This was a rather intensive two hour evaluation where Beth was really put through her paces by staff and their eager graduate students. I was allowed to watch from behind a two way mirror as Beth struggled and struggled to do the very best she could. This was one evaluation she wanted to ace and she did an extremely fine job. The upshot, they could help Beth and she was admitted to therapy at the Eblen Speech and Hearing Clinic starting in the summer sessions of 2014.
The summer sessions were productive but the speech therapy really took off in the fall semester of 2014. The therapy would take various forms such as name as many farm animals as you can. When she started Beth was able to name two and then she would hit a roadblock. This was true for other topics as well. It was amazing what she would recall however. Once, she was asked to name as many colors as she could and Beth said “red and fuchsia.” She wasn’t able to come up with anymore colors without prompting and afterwards I asked her “fuchsia?” and she said “well it’s what came to my mind.”
After a few sessions Beth was able to name three items and then four and then five before she hit the roadblock. When her sessions concluded she was able to name twelve to fourteen items. There were many other types of testing she underwent. Her descriptions, vocabulary and attention to details continued to improve. From being unable to name more than two states, two animals or two foods without prompting she was now going to twelve to fourteen consistently with no prompting. The two step instructions were a struggle for Beth. As an example, she would be asked to touch her nose and then raise her hand. Sometimes nothing would happen and sometimes she would be able to do one but not the other. At the end of the session, she was able to consistently follow two and even three step commands. The new normal was quite pleasing.
The interactive computer has been left on the shelf. Beth’s voice has progressed in strength and clarity to the point where she now uses an Ipad with an application that lets her do voice activated texting. This has opened a whole new area of communication to Beth and she no longer feels as isolated and alone because she can reach out and text friends and family. Sometimes the Ipad doesn’t pick up exactly what she means but it’s close enough that we can all understand and more importantly she can receive communications. Beth’s right side field of vision was impaired by the stroke but she is able to turn her head and read quite well.
As we start 2015, Beth continues to improve on her core strength and is much easier to move from her comfortable armchair to her wheelchair. I can do it without assistance and with very little fear of injury. Beth has learned to stand on her left leg, plant her right leg and pivot so she is not dead weight when she moves. The danger of falling is ever present but with care and attention our new normal way of transfer has worked well.
The goal is for Beth to come home and live with visiting nurses’ assistance as well as my help. We have a ramp to our home. We have renovated the bathroom with a wheelchair accessible shower. We have a wonderful van and transport is a breeze. Blaine’s Farm and Fleet sells aluminum ramps which fold up like a jackknife allowing us to get over a two or three step barrier with ease. All in all, our normal means of transportation works quite well.
We work, we plan, we seek the new normal. We love each other and we have amazingly adjusted to our new circumstances. Our retirement plans have certainly changed but that’s okay. When Beth and I were first married she placed a quart mason jar on the dryer to hold loose change. The label on the jar was “Trip to Barbados.” We may not get that trip taken care of but we’re going to get in the van and drive to see the redwoods. Sooner or later. It will seem entirely normal when we do it.