Good Shepherd...Holy Hell!

Our entire family was so thrilled to find out that my mom was well enough to be transferred to a rehabilitation center while her doctor filed the petition with the hospital review board to allow him to treat my mom with an “experimental” T cell therapy. We honestly believed that this would be a great step forward but it was definitely more along the lines of 2 steps back…

Perhaps it was just coincidence that gave us Dr Stephen Schuster but at this point in my life I am not embarrassed to say that I believe it was fate, divine intervention, call it what you like but this is the man who told my mother he will give her her life back and he is the kind of man you believe in. Because my mom’s presentation of PML is so extremely rare it is not uncommon to find medical professionals who either do not know of the disease or have never witnessed it before, but Dr Schuster has been my mom’s oncologist for almost 10 years and is the only physician to have treated a patient for PML caused by JCV in a patient who was not immune compromised and have that patient not only live but gradually return to the condition they were in before the onset of PML. The T cell therapy he would like to perform consists of removing my mom’s own T cells and stimulating them in a laboratory environment causing them to replicate and then inject them back into her system thus raising the amount of T cells my mom has available to fight the virus. The treatment is considered experimental because it has only been used for1 patient and therefore requires review from the hospital board before her physician can proceed. Dr Schuster is confident the treatment will be approved and has asked for the process to be expedited so we will most likely have an answer in the next week or so. The chances of finding a doctor to do this are a long shot, finding out he has been your doctor all along, before you ever heard of the disease is one in a million, but then so is my mom.

When I arrived at my mom’s hospital room the day of the transfer I found her very upset and agitated about being moved to the rehabilitation center. She kept asking me to take her home and to not let them send her to the Good Shepherd Rehabilitation Center where a room had been arranged for her. She told me that if we brought her there it would be to die. I spent the entire time with her reassuring her that the week of physical therapy would give her the strength she needed for the treatment and would get her one step closer to coming home. Transport was arranged for 3pm and I watched as the nurses at HUP said their good-byes and wished my mom all the best. Dan was by her side so that he could ride with her in the ambulance to Good Shepherd, my mom cried as they moved down the hall. Although many of my mom’s motor skills are deteriorating rapidly her mental acuity has not been affected. I was concerned that she was starting to lose some of her mental functions and that was the reason for the hysteria, as I look back on the entire episode now I realize that my mom’s mind is fine and in her heart she knew more than I.

We were greeted in the lobby of the fourth floor at Good Shepherd by the administration clerk, Cynthia. She had us sign the necessary paperwork while the nurses and physical therapist assessed my mom. The facility is set up beautifully and boasts acute care for medically complex patients and I have to admit that I was impressed with the set up. I spoke to the nurses and they seemed extremely friendly and well-equipped to deal with my mom’s condition. This experience taught me that the phrase “things aren’t always what they seem” was spoken by a very wise person.

My mom was settled in by 4pm and we asked the nurses if she could get her medication for nausea as she was feeling a bit sick and was extremely agitated. We were told that they would confirm her dosage on her discharge papers from HUP and they would get her medications. At 5pm her dinner tray came but my mom wasn’t feeling well enough to eat so we asked again for her medication and were again told that they were reviewing her discharge paperwork. At 6:30 the first episode of vomiting started and my sister Kelly went out to the nursing station to let them know she was vomiting so that they could tend to her. The nurses stared at her for a few minutes and then her nurse finally got up and came into the room to stand by her door and watch as we cleaned up my mom and stripped and cleaned the bed. He did point my sister Chris in the right direction for clean linens so I guess we should be glad for that much. By 7pm we had my mom cleaned up but had still not received any of her medications and we were starting to realize that no matter how far down we put the thermostat in her room it just stayed around 84 degrees.

At 8:30pm I went out to speak to the nurse at the station and asked her about my mother’s medication. She explained to me that the doctor was on another floor and that she would be up soon to address my mom’s paperwork and get her medications. I tried to explain to her that vomiting is a part of my mom’s condition and that it would continue if she did not have her medication on time. She explained to me that she was an RN and had a medical background that I did not and that she was well aware of my mom’s condition. I am sure that nurses have a tough job and that they deal with patients and their family trying to tell them how to do that job on a regular basis and after watching them come and go during my mom’s 3 weeks of hospital stays I was able to recognize her condescending little speech for what it was, a way to put me in my place. During this time I have also learned that I am my mother’s advocate and it is my responsibility to speak for her when she cannot do it for herself. With that in mind I asked the nurse if she had ever cared for a patient with PML and when she answered “No, but…” I cut her off and asked if she knew what PML was and how it worked and when she again answered in the negative I took the opportunity to put her in her place and said that I would explain it as best I could considering my lack of a medical background. I went on to discuss PML and the rapid deterioration it caused. I told her how my mom’s condition was 10 times worse on that day than it had been just 3 days previous and how she was losing her ability to move her own body and that no amount of physical therapy would give her those abilities back if they couldn’t stop the virus from attacking her brain. I went on to inform her that she may have thought that she was going to sit behind her little desk with her RN name badge and totally ignore the patient in room 4046 but that she had thought wrong. She stood and told me she would go and find the doctor and bring her to my mom’s room. I figured we understood each other, but I guess Dana was right when she said “sometimes you just can’t fix stupid.”

By 9:30 visiting hours had been over for 30 minutes and all 7 of us stood around my mom’s bed fanning her as she pulled at the hospital gown ripping it off and thrashed about complaining of the heat. The temperature in the room had climbed closer to 90 degrees, my mom’s dinner tray sat on the table untouched, she still had not received her medication and there was not a single nurse to be found. My mom told us she thought she was going to be sick again, the vomiting started a few minutes after that and was the beginning of some of the worst images we have seen since the onset of this disease.

I instantly pressed the nurses call button on the side of the bed as I reached for the basin someone handed me to catch the vomit, my sister Chris searched the immediate closets until she found clean towels and linens, Dan and Deb stood on the opposite side of the bed reassuring my mom that she was okay and Dana, Kelly and Helen began stripping soiled sheets from the bed. I pushed the call button again, the vomiting continued and I looked away from my mom and out to the hall and yelled that I needed a nurse and realized as I was turning my head back to her that my mom was too quiet. I looked into her flushed face and her eyes were wide and scared, they darted wildly around the room. It clicked in my brain right away and I said “Mom are you alright, are you choking” as I pulled her further forward. At that moment her eyes locked onto mine and the fear I saw there was clear and I know it is an image I will see in my worst nightmares for many years to come. I know in those moments I did everything wrong but luckily as I pulled her forward her body started to convulse and vomit and mucus came pouring out of her mouth. The intensity of the moment passed slightly but the feeling of urgency didn’t leave and I screamed again for a nurse and again no one came. My mom lay back against the pillows, weak and drained and Dan stood at her side smoothing her hair from her soaked brow. We left Dan and Deb there with my mom as the rest of us ran into the hallways screaming for a nurse, my sister Kelly found a nurse’s assistant and yelled to him that our mom was choking on her own vomit and when he didn’t acknowledge her or show any signs of rushing to our aid Kelly told him she would call 911 to get my mom the help she needed and he told her to “Do what you gotta do” and he moved behind the nursing station desk and sat down. My sister Chris found a nurse further down the hall on the phone and yelled to her that my mom needed help immediately and turned to run back to my mom’s room. As the nurse showed no sign of moving my cousin Helen started yelling “What the fuck are you still doing on the phone?!” Finally, a nurse came from another patient’s room and asked us what was going on; she rushed to my mom as we explained the situation. 20 minutes had gone passed.

After my mom was cleaned and calm the head nurse of the facility came up to offer us a fan to beat the heat in the room (the patient in the next room informed us that the system was broke and it had been that way for over a week by that time) and asked us if everything was okay. My cousin Helen spoke before any of us could regroup enough to answer. “She didn’t even get to eat her fucking dinner! Do you think that is okay? This is bullshit, she was choking on her own vomit!” We all stood in stunned silence after the outburst. Helen is shy and quiet, she gets nervous about the language barrier when she orders Chinese food for goodness sake, but she loves my mom more than anything and she couldn’t keep quiet. Later, she would apologize to each of us explaining that it wasn’t her place to say anything but she was just so upset. Helen is supposed to move upstate soon closer to her brother and his family but my sisters and I realize that my mom and Helen are not just cousins but best friends and with all that we are going through we can’t let her go. We love Helen and need her here with us as much as our mom does. After Helen’s outburst I believe it was Dana that informed the head nurse that she could “shove the fan up her ass and blow her brains out” for all we cared, we wanted transport set up to move my mom back to HUP so that we could have a chest x-ray done to rule out aspiration pneumonia.

11:30pm found us in an exam room in the HUP emergency department. A chest x-ray was done and looked good but doctors wanted to re-admit her as they were still concerned because aspiration pneumonia has a lag time and may not be spotted immediately. By this time my mom was bordering on hysteria and it took repeated doses of atavan, benedryl and finally morphine to bring her down enough to sleep. There are only allowed to be 2 visitors by a patient’s bedside in HUP’s emergency department but we were lucky to get a wonderful nurse named Jeanine who allowed us all to be there. As we received word that my mom was being admitted back to Rhoads as soon as a bed became available Kelly, Chris and Helen headed home to take care of things and Dana, Dan, Deb and I stole a few blankets and made our beds on the emergency room floor around my mom’s gurney to wait for a bed to become available. It was 2:30am.

An hour later Jeanine woke us to let us know that a room was available in the transition unit (kind of an extended emergency) and my mom would be there until a bed was available in Rhoads. We filled out the necessary paperwork and left my mom sound asleep in their care and went home to get a few hours rest of our own. It was 6:15am.

We got back to my mom’s room in the transition unit a little before noon to find her extremely upset and crying hysterically. When she saw me she kept saying “Jodey, I was calling you and calling you and you never heard me.” The guilt of not being there sooner is difficult to swallow some days but I carry it with me nonetheless. My mom was disoriented and believed that we had left her in the room at Good Shepherd. Once we made her realize that we were again in HUP she relaxed enough to be evaluated by the speech and swallow specialist so that they could release her to eat. She received thickened juice, applesauce and a graham cracker which she ate before demanding that we take her home. Dana told her she would take her home but I was afraid and said that we should think about it first. My mom was angry with that and told me she hated my guts and didn’t want me there anymore. I left the room so I didn’t upset her anymore and went to the cafeteria to deal with my own emotions. I know she didn’t mean it but it is a sucker punch all the same. I love my mom dearly and only want the very best for her, sometimes I just don’t know what that is and in those moments I am relieved to have 3 wonderful sisters to share my worry. We talked it through and voted on it. Of course the choice of sending her back to Good Shepherd received a unanimous response, “Can I get a hell no?!”