Laughter is the best medicine...

Due to a sore throat and a fever I was forced to wait at home while my mom had the port put in to harvest her cells. I received a text message from Dana letting me know that the procedure to insert the port went well and Dr Schuster’s team would be up to harvest the cells in 20 minutes. The entire process will take 2 hours and then we will be forced to wait another 10 to 14 days as the cells are stimulated in the lab before being . As my sister Kelly has said “the light at the end of the tunnel is very bright,” but the wait is another story! I thought this would be a good opportunity to share a few of our family’s funnier moments and sweeter memories.

Let me begin with one of my favorite stories about my quiet and reserved cousin, Helen, who we are corrupting daily—Just after my mom was admitted to HUP we received the handicap placard that we requested when we thought she’d had a stroke. We have been using the placard to find a good spot near the elevators as we cart food and laundry back and forth for Dan while he stays by my mom’s side. On a day when Dana, Kelly and Helen drove together there was a security guard standing beside the handicap spot chose and Helen spotted him as Dana hung the placard from the rearview mirror. “Oh my God, somebody better limp when we get out of the car!” Dana and Kelly laughed and gathered up their gear to head into the hospital. They had made it as far as the Pearlman Center bridge before Dana realized Helen wasn’t with them. As she looked back she spotted Helen about 20 feet behind them doing some kind of limp that made her look like a handicapped penguin. She nudged Kelly and told her to check out “Gimpy” behind them. Kelly turned to admire Helen’s handicapped penguin impersonation and between her laughter informed her that it would have been easier to fake a heart condition! The guard was gone by now and the three stopped to use the restroom before heading to mom’s room in Rhoads. As they came out, adjusting their gear once again, the guard resumed his post at the desk. Helen resumed her limp.

Next, we will head back up to my mom’s room in the Rhoads building to share a private sporting event. As you know, my mom did end up developing pneumonia and we were forced to use a suction hose to remove any mucus she coughed up. This is a difficult thing because the ability to cough is something my mom is losing because of her illness, but sneezing is another thing. The nurse explained to us that sneezing is a reflex that you really have no control over and therefore, my mom tends to bring up more mucus when she sneezes. All my life it has been a running joke that my mom can never sneeze just once, a minimum of 3 to as many as 15 times in a row. We are just beginning to realize the irony involved with the fact that a strange, repetitive sneezing quirk my mom has had her entire life is now something that is saving her life, we will again chalk it up as fate, regardless of how idiotic it sounds. Now for the fun part, last Friday night left Dana and Dan with my mom during the monster of all sneezing jags. It was around bedtime so my mom was wearing the huge mitten on her hand that stops her from pulling at the feeding tube during the night. As soon as the sneezing started Dan jumped from bed to grab the suction hose and my mom starting swinging that heavyweight mitten as he closed in. Dan took position behind the head of the bed and made small jabs at my mom’s mouth with the suction hose as she landed a few roundhouse punches to his head. After 5 minutes of watching Dan ducking and weaving and cheering my mom on “That was a good one, Bonnie. Got a lot on that one” Dana could stand it no longer. She advised Dan to leave my mom alone and reminded him that there was not a thing wrong with her memory. The idea of future payback had Dan wrapping up the suction hose, “Next time we’ll call the nurse.”

My family is not an extremely religious group. That is not to say that we do not believe in God but you are not going to see any of us at Sunday mass. I have taught my children to believe and to always have faith in God as events occurred that required explanation. I did not sit down with them to teach them things such as God’s will when my mom became ill because I wasn’t sure if was a conversation I could make it through. So the sight of 3-year old Cadence kneeling by her bedside and making a steeple with her hands as I got her ready for bed that night had me surprised and charmed. She tilted her tiny head and closed her eyes and I listened in awe to her sweet voice as she spoke her little prayer. “Hello, God. It is me, Cadence Rae Given. Please make my meemom all better so that she can push me on the swing when I can go outside with no shoes. Thanks, bye!”

Four-year old Connor takes a different approach. When he told me last year that he wanted to be a food scientist when he grew up I stopped thinking along traditional lines when I imagined his future. He believes that if we simply bring Grandmom some hot soup she will be good as new. The key to soup, Connor tells me, is that it must be hot, so I am to “speed like the other cars” when I bring the soup to Grandmom. The funny thing is that he is not so far off the mark with his notion of driving in the city, which brings us to another Helen moment.

Driving home from HUP is a totally different nightmare. The traffic is severely congested and people are just not in the finest of moods. Dana picks her way through potholes, cabdrivers and panhandlers as she gets us to 95. One night we happened to leave at the same time as Kelly and Helen and tailed them for a bit before switching lanes and moving ahead. I am sure that Kelly and Helen do a great deal of talking and smoking during their drive home and this must have been what prevented them from noticing Dana and I leaving them behind at the traffic light. There is one intersection as you are leaving the hospital that always has people in an uproar, 2 lanes go straight and a third lane is to make a right-hand turn but only on the signal. It’s the signal that gets everyone, they all start beeping at the lead car in the turning lane, angry over the fact that they are actually waiting for the light to change from red to green. .This night found Kelly and Helen as the lead car with a silver SUV similar to mine, laying on the horn behind them. Kelly looked back and laughed thinking it was Dana and I being smart-asses and Helen proceeded to hang her entire arm out the window with her middle finger riding high. As the light changed and the silver SUV pulled alongside Helen was rewarded with a view of a woman she had never seen before in her life. “Holy fuck, Kelly, it’s not even them!” Later, Helen would inform us of how she could have been killed pulling a stunt like that, but Dana just believes she should have directed her finger at the panhandler who carries the sign that says SUPPORT A VET FROM 1964, she believes that if he hasn’t found a job since 1964 he is incompetent at best and Helen would be fairly safe flipping him off for blocking traffic!

Panhandling seems to be quite an enterprise in the city and I have to admit I am always a bit surprised at the audacity of some. During a visit to the McDonalds across from the hospital, a few of us had the pleasure of meeting Big Red, as Dana calls him due to an ill-fitting red baseball hat. As I said earlier, my stepfather will start a conversation with anyone and this brings us more knowledge than we care to have. After a lengthy conversation with Big Red, Dan informed us that panhandling outside of HUP can earn you $300 to $400 a day. I am sure this is the thought irritated Kelly when he walked up to her while she ate her meal with Helen and Dana and interrupted her conversation to ask for money. Kelly turned to look at him and her voice was firm and annoyed, “Excuse me. No.” she stated. The word “bitch” could be heard as Big Red walked away, causing the manager of the McDonalds to ask him to leave. After Helen finished eating she went outside ahead of Dana and Kelly to smoke, and after watching her look back and forth a million times, fearing Big Red’s return, Kelly rose from the table and said, “We better go out there and get her before she gives herself whiplash!”

You are loved, Helen. People spend most of their lives looking for the place they belong, please know that you have found yours, and it is right here with us!

We are go for launch...

After a rejection of the protocol and several revisions on Friday, we received word from Dr Schuster Monday night that the hospital review board has approved the T cell therapy. The phone calls went back and forth spreading the news and the excitement was mingled with relief, a little fear and a lot of determination. It is difficult to watch the disease progress and know that you are doing absolutely nothing about it; this approval gives us the opportunity to move passed the feelings of helplessness toward effectiveness. We have pinned all our hopes on this treatment and it has become, for us, the stuff dreams are made of. Our prayers will continue and will most likely be more intense than before, we realize we are not out of the woods, but would like to think we can see the light in the clearing.

I am well aware of the obstacles we face, but still hope lives here…

I've missed you, mom...

After worrying through the night and most of the morning Dana and I were able to leave work at lunch today to visit my mom. When I walked through the doorway of my mom’s hospital room I was greeted by a sight I just didn’t expect to see this day. My mom was sitting up in bed watching the bustle of activity in the halls on the seventh floor of the Rhoads Pavillion and she smiled as I walked into the room with Dana and Helen. She looked relaxed and almost content with her surroundings, her hair was clean and shiny and her eyes were lit up like they haven’t been in weeks. I went to her bedside and told her how wonderful she looked and she started to fuss with her right hand. I figured she had it tangled and when I removed the covers I was confronted with the sight of a white mitten about the size of a boxing glove, it looked like a huge q-tip on the end of my mom’s arm. I started to laugh, I couldn’t help myself. “You got yourself a mitten, huh?” My mom smiled and patted the side of her stomach that holds her feeding tube with the big, puffy mitten. “Yeah,” I said “it’s because you pulled that out! So, don’t do it again!” My mom smiled at me again and waved the mitten at me and clearly said the word “off.” My mom hasn’t even tried to say a single word in the past week and the excitement I felt at hearing that one word was indescribable so after I made her promise not to pull at her feeding tube I unhooked the Velcro fasteners on the mitten and removed it from my mom’s hand. She stretched her fingers slowly and then proceeded to reach up and pull the oxygen hose from her nose. “What the hell mom!” I said “Those nurses are going to come in here and put those mittens on me for Christ’s sake!”

She smiled again...

Outta here...

Yesterday my mom ripped apart her IV lines and removed her feeding tube and then proceeded to swing her legs over the side of the bed while pulling her paralyzed left arm across her lap with her right. She informed the nurse of her plans to leave and her nurse told us later that she would most likely have caught my mom doing a belly crawl to the elevator if the pain from the dislodged feeding tube hadn’t caught up with her. Dana and I left work in search of a parking spot at HUP at soon as the news trickled down to us and we arrived to find my mom coherent and extremely pissed off. I asked her if she was causing trouble and she said yes and when I told her to stop it she of course told me no.

She was sent in for surgery around 6pm to have the feeding tube adjusted and will have a CT to make sure nothing leaked from the abdomen. None of this is pretty and it does make me feel mad at the world because I have to experience it, I guess that is selfishness on my part. My mother is going through hell and I have the nerve to say I am mad at having to watch her do it. I know if I were more honest with myself I would admit that I am just trying to hide the fear from myself and others; it is choking me, this welling panic rising through my system. Please God, don’t take her. I stop myself from saying stupid things like “I can’t live without my mom” because I know that isn’t true, of course I would go on with my life, raise my children without her. The fact of the matter is I just don’t want to have to do that. I need her so bad and when I think of our lives without her the ripple of fear shoots through me and I feel like I am suffocating. And that feeling makes me a little angrier with the world and all its trials and tribulations.

Kelly and Helen are the “night crew” of my mom’s visitors so they were the ones waiting with my stepfather during my mom’s second feeding tube surgery. I spoke with Kelly after she saw my mom in recovery and she said mom looked okay but a little pale. Her breathing was labored due to the pneumonia she has developed and it caused enough concern with her surgeon that they gave her medication to reverse the sedation. This is fine except for the horrible understanding that it also reverses the efficacy of the pain medications as well. I went to sleep last night knowing that my mom would spend her night in a good deal of agony.

I have managed to keep my sanity because we have heard from my mom’s doctor that they will be collecting the cells on Friday to begin the T cell therapy. We have only received approval from the hospital review board to allow the cells to be harvested, but not permission to reintroduce them after stimulation. Dr Schuster has assured us that the approval for reintroduction will come; the hospital board doesn’t let you spend $25,000 in grant money to start a procedure that they have no intention of letting you finish. The approval for the overall treatment protocol for the T cell therapy requires the full board be present and that does not happen again until next Monday. The cells take 10 to 14 days to grow, so at least we can have them started while we wait for the full board meeting to commence.

God never gives you more than you can handle—but it sure does feel that way…

Every morning I get up and start the ritual of getting myself out the door. It is the same routine regardless of plans for the day. It doesn’t matter if I am going to work or to visit my mom at the hospital, I still need to shower and brush my teeth and my hair, if I remember. I guess the only part of my routine that is affected by the day’s plans is my shoe choice, I am quite certain you cover a few city blocks traveling from the parking garage at HUP to my mom’s room in the Rhoads building. I use to get up at 5 each morning and take some time to have a coffee before I showered and got ready for the day, it was the perfect amount of “me” time to start your day. Lately, the snooze button on my alarm has been getting quite a workout. I apologize to my husband because he has to listen to it until I decide to drag myself out of bed, but he just shrugs it off and says he knows how exhausted I must be. I don’t bother to tell him that it is not exhaustion that leads my snooze button addiction but the realization that “me” time is just not for me anymore.

My mornings are now jammed into half the time I need to get ready which causes me to rush to accomplish simple tasks like brushing my hair. I usually leave the house without breakfast or even that desperately needed cup of coffee. I can shower in 2 minutes and use about 8 minutes to brush my teeth and hair, put in my contact lenses and get dressed and I am still aware of the fact that I have too much time to think during this process. Thinking is not something I want to do right now, it usually leads to clutching the edge of the vanity to stop myself from going over that edge or vomit in the sink because some thoughts cannot be handled, even by your stomach. I have been told that this is not normal but at this point I have a real issue with what other people think about normal.

I am extremely angry at the progression of this disease. My mom cannot speak to me at all yet she understands everything that is said to her. I cannot imagine the frustration she feels being trapped and alone in her own mind, but I am forced to see it every day when I walk into her hospital room. She now has a feeding tube, at times a catheter and you realize how scary things have become when you start to count the IV lines running into her right arm. It always amazing me that I find all of these things just part of my daily life and they don’t knock the wind out of me on a regular basis. I have always been very aware of the effects of PML and I admit that it is much easier to read than to watch. I still don’t believe in my heart that this horrible disease will beat my mom and anyone who believes it will just really doesn’t know her. I have an extreme dislike for the resident attending who stood at the foot of my mom’s hospital bed and tried to explain to Dana and I that a do not resuscitate order would be in my mom’s best interest. Dana and I did not agree with her and gave her the option of leaving through the door of room 7006 or the window.

My mom is a fighter, stubborn to the core and I am counting on that to carry her through this nightmare. As I watch the way my mom’s condition affects those around her I realize just how much she is loved. My cousin Helen spends a few hours of each day at the hospital just to be near my mom. It brought me to my emotional edge when I watched my mom reach her hand out and Helen took it in her own and said “You have to get better Bonnie because I love you.” My mom and Helen are close and I know they love each other very much; it is just not something they say to one another on a daily basis. Before Helen’s mom passed away my mom stood by her bedside and promised her that she would always take care of Helen. I know that her love for Helen and the promise she made to her mom keep my mom fighting. My stepfather will not leave my mom’s bedside and does not allow anyone to discuss the possibility of losing my mom. I know most people think we are all living in denial of this disease and what it does but I know that our family simply chooses to live on the hopeful side—we owe my mom at least that much.

My mom is an amazing woman and is always there when you need her. All my life she has defended my choices and made sure I knew she was proud to introduce me as her daughter. I know in my heart that I would not be the person I am today without her influence.

Hindsight 20/20—Sanity 50/50…

Our HUP transfer vigil ended late Wednesday evening when the transfer team arrived just minutes after Dana and I left my mom’s room at St Mary Medical Center. We were about a mile from home when Dan called to let us know. He said my mom seemed relaxed with the transfer and as she would not have a private room at HUP, Dana and I decided it would not be worth making the drive that evening. We headed for home to regroup and get ready for the stream of train rides and meals at the HUP cafeteria that the week would bring.

The following morning Dana and I arrived at my mom’s room on the sixth floor of Rhoads to find speech and swallow evaluating her to see if she could be released to eat. From the look of things the release was not going to be any time soon. My mom has a deep, rumbling in her chest, the mucus is thick and wet and she has great difficulty getting rid of it. The speech and swallow specialist was using a suction hose to clear my mom’s mouth and as Dana and I unpacked our computers to work she hit a little too far and my mom began vomiting. She apologized to my mom as she reached for the basin by the bed and once my mom was finished she turned to change her gloves and help clean my mom up. While she had her back to my mom she continued to talk in a high, cheery voice.

“”I am sorry about that Mrs. Pine. You just let me change that gown for you and you will be feeling good as new in a jiffy.”

Dana and I were content to listen to the girl ramble on as our computers booted up, but a movement from the bed brought our attention to my mom. She had her eyes on the back of the speech and swallow specialist and was flipping her off. The gesture brought a smile to our faces and made me see my mom and not the disease. Who would have thought that flipping someone off would bring such joy!

As it turns out my mom is now unable to swallow at all without aspirating despite the thickness of the liquids. The attending physician came into my mom’s room later that afternoon to discuss our options. I am not going to pretend to remember a single medical term used in that conversation, the only words that pounded in my head were “feeding tube.” Yes, it has come to that. After considering the risks involved with the three options spelled out for us we decided that it would be best to allow them to insert a percutaneous endoscopic gastrostomy (PEG) feeding tube. It carries the lowest risk of infection and is a more comfortable and long-term solution.

PEG tubes are placed with the aid of an endoscope, the scope going down the throat to assist in guiding the placement of the tube through the wall of the stomach. The surgery is simple and involves little risk or discomfort at least that is what they tell you. The procedure takes about 20 minutes. The PEG tube extends from the interior of the stomach to outside the body through a small incision only slightly larger than the tube itself in the abdominal wall. The tube is prevented from coming out of the stomach by a very small balloon at the end of the tube which is inflated within the stomach after insertion. About three inches of tubing will protrude from the incision area. Initially, there may be some discomfort while getting used to using the system, from gas or air, or from adjusting to the liquid foods themselves.

That is my basic understanding of the tube and how it works. It is much easier to spell it out here than it was to sit in the waiting room of the surgery unit while it was inserted into my mom’s abdomen. Dana and I left the hospital Thursday night knowing the surgery was scheduled for 10am and we would need to be there well ahead of time. My mom seemed relaxed about the decision to insert the feeding tube as Thursday’s visit came to an end but a phone call from Dan while stuck in traffic on the ride into the city Friday morning told Dana and me a different story.

We arrived at my mom’s room 30 minutes later to find her flushed with agitation, her blood pressure was elevated and through her impaired speech I could make out the words “They killed her.” It took Dana and me 40 minutes and a dose of ativan to calm her enough to even ask her what was the problem. The procedure had been canceled due to her elevated blood pressure and we were left to try and convince her to allow doctors to put her back on the surgery schedule and then needed to keep her calm enough for them to proceed. Much easier said than done, but as I said before, we aren’t quitters and we believed this was best for her.

My grandmother was admitted to St Mary Medical Center in July of 2000 after vomiting blood in the waiting room of her cardiologist’s office. After stabilizing her, doctors decided it was in my grandmother’s best interest for them to perform a biopsy of a mass they had discovered in her stomach. As it turns out, they were wrong. After the biopsy my grandmother’s blood did not clot and she proceeded to bleed out as our family stood around her bed and respected the “Do Not Resuscitate” order she had in place. I was alone in the room with her when the bleeding started, thin and red, it poured from her nose and mouth and is an image I would not soon forget. I remember each second as it ticked by, pushing Dana from the room before she witnessed the scene that haunts me to this day, the pounding of my mom’s footsteps as she came down the hall to be by her mother’s side in her final moments. I know this is the moment my mom replayed when she panicked over the idea of her own “stomach” surgery and it is this nightmarish link between my mom and myself that allowed me to understand her and explain to her doctors what she meant when she repeatedly babbled the words “They killed her” as the ativan took effect.

My mom came through the surgery with flying colors and 2mg of morphine helped her get through the night with those same colors. Dana was at her bedside the next day where she remained the entire day, waiting to speak with her doctor. She made sure my mom was comfortable regardless of whether that meant an adjustment to her pillow or another dose of morphine. I took the day to spend with my children and waited for any news from Dana. A few text messages throughout the day let me know that my mom was doing well and a phone call after 9pm filled me in on the visit from Dr Schuster.

The latest MRI shows that the lesion has worsened but there are no additional lesions at this time. All things considered this is wonderful news. The hospital review board has still not come through with their approval on the T cell therapy and Dr Schuster said he will give them a push but if they do not come through by the end of the upcoming week he would like to start my mom on a malaria drug called mefloquine that has had some success with PML patients. The concern with the mefloquine is that its side effects include severe depression, anxiety, paranoia, aggression, nightmares, insomnia, seizures, birth defects, peripheral motor-sensory neuropathy, vestibular (balance) damage and central nervous system problems. Central nervous system events occur in up to 25% of people taking mefloquine, such as dizziness, headache, insomnia, and vivid dreams. I know what you are thinking; my mom has several of those effects already; that is what leads us to our biggest concern, if my mom’s symptoms worsen while on this drug how can we know if it is because of the treatment or the disease?

Dr Schuster would like to go this route because he said we want to be doing something for my mom and if review board approval comes through for the T cell therapy after the mefloquine is started we will continue with both treatments. I do have a lot of assurance in the fact that Dr Schuster is not a man who jumps the gun in any event. He is impatient with the response from the review board but is not the type to let it cloud his judgment of what is best in caring for my mom. I do have much faith in his abilities and believe him to be a brilliant doctor who has not forgotten that behind all the medicine and procedures is a person and her name is Bonnie Pine. We are truly blessed with a doctor who has both intelligence and compassion; these rarely reside equally in one person.

Tonight, before I fall asleep I will once again whisper to God asking him not to take my mom. I will admit that I am very much afraid of the dark and I will pray for the light.

Déjà vu...

Sunday evening finds us back at the scene of the crime. After a phone call from Dana informing me that my mom was vomiting all day and the last time looked like blood through it, we decided to take her to the emergency room at HUP. We managed to get her dressed warmly and loaded into the minivan but she began vomiting blood again 2 minutes into the journey. Dana and I decided that we were not going to be able to make the 45 minute drive to HUP and would have to settle for our local hospital where she had been misdiagnosed 3 times before being transferred to HUP originally.

We arrived to an overflowing emergency department at approximately 7:00 pm and I explained my mom’s condition to the woman at the admissions desk. I told her that we came in that evening because my mom was vomiting blood and having some difficulty breathing. She put a name band on my mom’s wrist and told us to have a seat. This was not the response I was hoping for but we stood off to the side against the wall while I reminded myself that other people were just as sick as my mom and were entitled to care. As we waited a man came in pushing his wife in a wheelchair, she was vomiting and having some sort of seizure. The man explained to the admissions clerk that his wife was having some sort of reaction to a medication she took, she was given a name band and the man parked her wheelchair near my mom. My mom began vomiting again and the admission clerk asked us if we could move her further down the hall where other patients wouldn’t see her, as Dan started to move my mom’s wheelchair further into a hallway alcove the triage nurse called a girl with a sprained ankle and started attending to her.

“I don’t think so.” I told the admission clerk. “My mother is vomiting and can’t breathe and you are taking a patient with a twisted ankle? I don’t think you understand, I need a doctor now before my mother dies in your waiting room!” I pointed to the woman with the drug reaction, she had begun twitching and vomiting again “This woman should already be with a doctor!” The clerk asked me to calm down, but she did get on the phone and within seconds a triage nurse came to speak to my mom and a doctor came through the emergency doors to retrieve the woman with the drug reaction. As the automatic door was closing on their retreating figures the husband turned to me and nodded, his eyes were wild and frightened. I know the feeling that goes with that expression and I pray to God that all went well for him. Maybe my reaction was wrong, I mean, I am not a doctor so what the hell do I know. Every action is on instinct and I just wait for my brain to catch up, sometimes my instinct is correct and other times my brain catches up to tell me what an ass I am.

We spent the remainder of our evening explaining that PML stood for progressive multifocal leukoencephalopathy to the ER doctors and nurses who finally put a call in to Dr Schuster to discuss the case with him. I figure they got all they could from Google and were scrambling. After an extensive conversation with Dr Schuster the ER attending came in to tell us that upon Dr Schuster’s request, my mom would be admitted to our local hospital and transferred back to HUP as soon as a bed became available. A bed was brought in for my stepfather and Dana and I settled into the chairs provided to wait for mom to be moved from the emergency department to the telemetry unit on the 2nd floor.

Eighteen hours later my mom was still in the emergency department, Dana and I had refused to let the doctors perform an endoscopy on Dr Schuster’s advice and this brought us a considerable amount of attitude from the staff at our local hospital. At first I was surprised, I figured they would want her transferred out of their hospital because they were so unsure of how to treat her, but then I came to realize that it is almost like those cop shows where the local authorities get ticked off when the FBI steps in, it’s all a matter of having your toes stepped on. My mom’s nurse even came to inform me that Dr Schuster’s opinion was not the word of God.

“How do you know? When was the last time you spoke to him?” I asked her
“Who—Dr Schuster?” she asked
“No,” I said “God. When was the last time you talked to God?” Being tired and scared puts my sarcasm level at an all time high, that nurse just paid the price of many sleepless nights and days full of worry. Once again, I am truly sorry if I offended her but sometimes you can’t shut your mouth fast enough to keep your foot out of it.

My mom was transferred to the telemetry unit of St Mary Medical Center late Monday afternoon. I actually had to Google the term to find out what a telemetry unit was so that Dana and I could stop referring to it as the “we have no idea what is wrong with you ward” of the hospital. It turns out that a hospital telemetry unit is a unit in a hospital where patients are under continuous electronic monitoring. Telemetry is the practice of sending electronic signals from one place to another; it allows hospital personnel to monitor heart rate, heart rhythm, breathing, and other things both by the patient's bed and at a remote location like a nursing station. I can see where this could be a useful tool for nurses to detect emergent medical issues before they become a problem, the only concern I have is that it takes a nurse at least 45 minutes to respond when my mom accidentally pulls of one of her heart monitor electrodes or when her IV line becomes occluded and the machine starts beeping.

The telemetry unit also means that your mom will be so full of ativan that she is totally unable to communicate with you until it wears off. After experiencing a day like this Dana and I decided that someone needed to be with her at all times and we had to inform the nursing staff that her intake of ativan should be limited. Rooms in the telemetry unit are not private which means Dan is unable to stay with my mom through the night as he has been since the onset of the disease. His absence causes my mom undue stress so Dan has taken to sleeping on the window ledge behind the curtains of my mom’s window, if he is discovered before morning he relents to the nurse and moves himself to the family waiting room down the hall with strict orders for the nurse to call him if my mom becomes agitated during the night. The overnight nurse is very nice and agrees to call Dan if anything occurs but her daytime nurse is another story, Dan has started referring to her as Nurse Ratchett. The patient in the next bed simply calls her lazy. My mom is developing a bad cough and you can hear the mucus in her chest. We were told on Monday that medication was ordered to dry some of that up, but she is yet to receive it.

The wait for a bed at HUP seems to stretch on for an eternity, as of Wednesday we are still watching the clock. We have received news from Dr Schuster that my mom’s tests have come back with the results we needed and the hospital review board should have their approval in by the end of the week. Hope springs eternal…