It's funny, the things that trigger your memory. I'm standing in an elevator at the Las Vegas Springs Preserve. I have an event in about an hour on Growing Up in Early Las Vegas. I am hoping people attend and am hoping the heat does not keep them away. It is my first event at the Springs and I would like for it to be successful.
The young man who is escorting me to the Library building pushes the button for the lower level. The sound the elevator button makes is the first three notes that a ventilator alarm makes.
Suddenly, I am no longer in an elevator at the Springs Preserve but back at Valley Hospital remembering the most harrowing month I have ever had.
A little back history.
Way, way back. (Please step into Mr. Peabody's machine). When I was a little, little girl back in 1959, my mother and my Bio-dad had a rocky marriage. My mother met a wonderful man who was not my Bio-dad. She and Bio-dad divorced. My mom and Mr. Wonderful began a relationship. It, too, got a bit rocky in 1961. We all ended up in Las Vegas in September, 1961. Mr. Wonderful ended up following my mother out to Las Vegas a year later. Long story short, my mom and Mr. Wonderful were married in 1963 (and have been happily married since then). In 1964, my mom was pregnant and there was concern that I would feel left out having a different last name than the rest of my family.
I was adopted by a man who had not contributed to my birth but who would raise me as if I was his very own, no questions asked. It was not always a harmonious relationship but the 1960s and early 1970s were not a harminous time. He taught me to question, instilled in me the desire to know more and always pushed me to strive to be the best I could be. He is, in short, my dad.
As he grew older he was plagued with health problems including a stroke that ultimately left him paralyzed and in a wheelchair.
Not so far back: (Please step out of Mr. Peabody's machine)
In May of this year, through the care of a wonderful cardiologist, we learned that his heart arteries were blocked. Stents were put in and my dad began to feel better. The cardiologist, Dr. Rah, thought my dad's cartoid arteries were likely blocked as well and thought that blockage may have contributed to his stroke back in 1995. He referred my dad to Dr. Holland, another cardiologist who specializes in carotid ateries. He wanted to my dad to see Dr. Holland, a cardio-vascular surgeon, as soon as possible as he believed that my dad could have a stroke at any time due to the severity of the clogged carotiod arteries.
He wanted my dad to have some CT Scans of his carotiod arteries done before making the appointment to see Dr. Holland. My parents have Senior Dimensions Healthcare. Trying to schedule the CT Scan appointments became a Catch-22.
We would call and try to make an appointment for my dad to come in. The schedulers would tell us they could not make the appointment because the referring doctor's office had to make the appointment. Dr. Rah's office would tell us that it was not their responsibility to make the appointment.
At this point I began to wonder how other people deal with the frustrating healthcare policies that seem determined to keep you from getting the care you need. If I had not been there to call every day and try to break through the Catch-22 (and there were a few days where we spent hours on the phone), what would have happened to my dad? He likely would have given up trying to make the appointments due to aggravation involved in just trying to get someone to do their job.
After going around in circles for over a week, we finally found a savior. Lynn, a nurse in Dr. Rah's office, listened as I explained the frustrating situation that the Catch-22 had us in. She understood completely and said she would see what she could do. Within 24 hours she had the CT Scans scheduled and the follow-up appointment with Dr. Holland.
The CT Scans, of course confirmed what Dr. Rah had suspected. My dad's carotiod arteries were 95% blocked with plaque. We met with Dr. Holland who agreed with Dr. Rah and a date was set for surgery, July 16th. Dr. Holland would do the left carotiod artery first and then a few days later do the right carotiod artery. We finally felt like we were making some progress.
On Monday, July 9th, my dad complained of chest pains and of not feeling good. Later in the afternoon he got that ashen look about his face. He refused to call the doctor or let us call the ambulance. He can be stubborn and hard-headed. By early evening, the color had returned to his face and he was feeling better. A little after midnight, he woke us up saying he has having severe chest pains and wanted to go to the hospital. We called 911 and they sent an ambulance.
They took my dad to Valley Hospital's Emergency Room (it was the one hospital in the Las Vegas Valley where both Dr. Rah and Dr. Holland had privileges). The EMTs were great. The Emergency Room staff was terrific. About 3:00 am, as my dad was resting comfortably and hooked up to a bevy of monitors, I took my mom home.
The next morning I talked with Dr. Rah who ordered up some tests. My dad was in a room on the fourth floor. The tests showed that one of my dad's heart stents had collapsed and would need to be repaired. It wasn't a complicated surgery and everything went off without a hitch. After surgery, he was sent to a different room on the third floor for step-down ICU patients. Dad did great after surgery and on Thursday, July 12th, the case worker was making arrangements for dad to come home for the weekend before coming back to Valley on Monday for carotiod surgery.
Friday, July 13th, an apropo day. Because my dad is paralyzed we can't just take him home. He has to have Medi-Car transport him home on a gurney. The case manager comes to his room around noon to tell us that Medi-Car would be there about 3:00 to take my dad home. The nurse got my dad dressed and ready to go. We signed all the paper work releasing dad from the hospital. Well, 3:00 came and went as we watched sitcom after sitcom rerun on TBS (the hospital which is only a mile or so from Cox Cable only gets maybe 10 stations, including the 5 network stations). We asked the nurse what had happened. She made some inquiries and discovered that Medi-Car had been there but they had gone to my dad's old room on the 4th floor. When they didn't find him there they left. I shook my head in disbelieve that the Case Worker, who had to come into my dad's room on the 3rd Floor to talk to us, could give them the wrong information.
It was Friday afternoon and the daylight was ticking away. I didn't want my dad having to hang around the hospital until 9:00 at night waiting to go home because he would only have a short time at home to begin with. Medi-Car, to their credit, was able to come and get my dad and he was home by 6:30 pm.
The First Five Things I Learned about Healthcare in America, Las Vegas Style:
1. Be the squeaky wheel. The old adage is right. The squeaky wheel gets the attention. Your loved one's health is at stake here. Forget the idea that you care about what people on the other end of the phone think of you. Your primary goal is to get the needed care for your loved one, not to be liked by people you will likely never meet.
2. Don't lose your temper. My friend Al, in Phoenix, who used to work for America West as a boarding agent, reminded me early of what he would say to passengers who lost their temper. "You're yelling at me and you want my help?". No matter how angry you get, try not to lose your temper. You'd be surprised how far you can go on a slow burn without ever raising your voice and how effective that can be.
3. Don't be afraid to ask for a supervisor. Tired of the Catch-22, tired of not making any progress, go up the food chain of command until you find someone who will actually listen to you.
4. Healthcare doesn't make it easy and it shouldn't be this difficult. The reality is that, in this day and age, the more obstacles they throw up feels like they hope to wear you down. If they wear you down, you will go away and it will cost them less.
5. Your loved one's health and life is at stake. Never forget that. Doesn't mean you have to turn into a raving maniac but you should realize that you are going to have to br alot stronger and much more vocal than you ever realized.
Up next: Carotiod Artery Surgery and what can go wrong, will go wrong.
Myths about Hospitals that we have picked up from the movies:
- Hospitals are quiet havens of caring and healing where people speak in hushed tones. In reality, there are few quiet places in a hospital.
- Hospital rooms are spacious enough for your loved one, all the equipment, the doctor and the pack of interns who travel with him and you to sit without being in anyone's way. In reality, they are more like the stateroom scene in the Marx Brothers' classic, Night at the Opera.
- Hospitals have chairs that don't require you being a human pretzel to be comfortable. If comfortable furniture in a hospital exists, please let me know where!
On July 16th, we returned to Valley Hospital so that Dad could have his carotid arteries cleaned out. Dr. Holland had determined that both were 95% clogged and once cleaned out, Dad would start to feel better.
Following the instructions that we received from the Hospital, we are there at 10:00 am. We quickly find out they have no record of Dad coming to the hospital but do have his surgery scheduled.
So, rather than pull up his admitting papers from last week, the young woman opts to start fresh from the beginning. I'm not joking. We must have looked quite the sight. My dad on a gurney on one side of the desk, the admitting officer on the other side of the glass, taking in his information.
The surgery is scheduled for 1:00 pm. After we get through the admitting process , we head for Pre-Op. They, unlike Admitting, are ready for us and get Dad ready for his surgery. The anesthesiologist comes by. He and Dad get along and Dad is feeling more relaxed. My niece, Serena, and my mom, Laura, come in and we begin the countdown to Surgery.
The plan is to do the left carotid artery today and in a few days, likely Thursday, they will do the right carotid artery and Dad will be home within the week. That's the plan at least.
The surgery is supposed to take about an hour. Dr. Holland comes in and reassures us that everything will be fine. They take Dad off for surgery. Serena and mom have to go to work. Someone has to be there in case something goes awry so I go to the waiting room.
The Surgical Waiting Room is filled with people talking on cell phones and watching CNN. Why do all waiting rooms have a dearth of good magazines to read? At least the people watching is good.
An hour goes by and still no Dr. Holland. I begin to feel a tad worried. Finally, he comes in and tells me that everything went fine but that there was more plaque than the CT Scan had indicated. He had to make the incision further up my Dad's neck to just behind ear. He says it will heal and Dad will be just fine. After recovery, Dad will go to Surgical ICU for the night and be transferred to a new room on the 3rd floor in the morning. That's the plan at least.
The Surgical ICU is around the corner from the Surgical Waiting Room. He is resting comfortably when I get there. His neck looks very swollen. The nurse, Aimee, tells me that is due to the incision. The incision looks scary. We pack it with ice. It still looks scary. Everyone assures us it will look better in a few week. They are right.
The next day, Dad's neck is the size of a medium balloon. He can have ice chips but nothing more. The last time he ate was dinner on Sunday evening. He is getting hungry. By Wednesday, they are talking about putting a PICC line so that they can give Dad food intravenously. Like everything else, it takes time for the order to be processed.
On Thursday morning, they move Dad to the 3rd floor. There we wait for the PICC line specialist to come and put the line in. She arrives a little after the lunch hour. The smell of wafting food, even hospital food, reminds my Dad that he is hungry. She gets the PICC line in. Then we have to wait for Radiology to come and take a X-Ray so they can be sure the PICC line is in properly. Finally about 4:30 pm they confirm that all is good with the PICC line.
How about getting Dad some nourishment? It has now been almost four days since he had anything to eat. Well, we have to wait for the Pharmacist to make the TPN (the intravenous food) bag up. By 7:00, we are still waiting. Finally, we learn that the TPN bags are delivered about 9:00 pm after the shift change. I wonder if they would take so long if they had gone 4 DAYS without food or water.
On Friday morning I ask Dad how he likes is "food" and he tells me that he has had better meals including those cooked by my mom. Hee!
Saturday, July 21st, passes uneventfully and that evening my mom and I sit down to watch The Godfather Saga. This is the version that debuted years ago on NBC and puts the story in chronological order. Despite the commercials, my mom enjoys it.
About 11:45 pm the phone rings. It is my Dad, calling from the hospital. He is having chest pains and can't get anyone to respond to his call light. Will I please call the Nurse's Station and have them send someone in? I am not making this up.
I call the hospital, get the Nurse's Station, explain the situation and tell them I am on my way.
When I get there I have to enter from the Emergency side of the building. This means I have to walk quite a distance to the elevators. I pass the Telemetry Room. This room is for monitoring all the Telemetry devices (they monitor patient's heart rates and rhythms) that are hooked up to patients. My Dad is on one. There is no one in the room.
You would think that given that they monitor important vital signs and are supposed to alert the Nurses Stations in case there is a change, they would use the Buddy System. That way, one person is there to monitor while the other takes a bathroom break, goes for coffee or to get the paper. The room is empty.
I get upstairs and they have given Dad some nitro and ordered an EKG. The nurse apologizes, the charge nurse apologizes, everyone apologizes. I don't even have to raise my voice. I just calmly remind them that he is a cardiac patient and this sort of mistake can cost him his life.
By Wednesday, July 25th, the swelling has started to go down. Dad is able to eat on his own and having passed the swallow test, can have liquids on his own. They schedule the surgery for the right carotid artery for Friday, July 28th. Dr. Holland is not available. It is summertime in Las Vegas and those who can go somewhere cooler do. His associate, Dr. Daugherty, will do the surgery. All goes well. This artery, while 95% clogged, is not as difficult as the other so the surgery is done in about an hour.
The good news, Dad's neck does not swell up. No need for TPN! Dad can eat and drink! Bring on the good food and liquids!
On Monday, July 30th, they tell me that Dad has developed a blood clot in his right arm due to the PICC line. They tell me it is no big deal, they will put Dad on blood thinners when they send him home in a few days and that will take care of the blood clot.
They release Dad on Wednesday, August 1st. While in the hospital, they had him on Coumadin, a strong blood thinner. They prescribe both Coumadin and Plavix, another blood thinner, for him at home. We can leave the hospital.
Pat, the Case Worker (not the one from two weeks ago), arranges for Medi-Car to come and pick my dad up and take him home. The two girls who show up to get Dad on the gurney are hardly able to handle a 6'1, 225 lb mountain of a man. But they manage. They get him home.
Getting him from the gurney to his wheelchair is a comedy of errors and they nearly drop dad more than once. Luckily, he has a lot of upper body strength and he manages to overcome their weaknesses.
That evening we sit outside in the cool of the night, watch the dog run around the yard and are grateful to have him home.
If this were a John Ford or an early Sam Peckinpah movie, there would have been storm clouds on the horizon and we would have heard thunder in the distance. But, this is real life and we are grateful for the tender mercies that we have.
We have no idea that in less than six hours our world will be forever changed and that we are about to experience the most harrowing month of our lives.
Next Five Things I learned from Healthcare in America, Las Vegas Style:
1. Everything takes more time than you think it should. I had no idea that it would take almost 24 hours to get a PICC line ordered, put in, X-Rayed, the TPN ordered and finally have the intravenous food arrive but it did.
2. A PICC line needs to be flushed any time they use the ports. This is very important. The PICC line my dad had had three ports. One for the continual intravenous food, the other two for blood draws and IVs. Any time they use those ports, they must be flushed. Be sure this happens.
3. "You are yelling at me and you want my help". This is probably the most important piece of advice I can stress. Do not yell unless it is absolutely necessary. A slow, cold burn is much more effective. I can not stress this enough. If they know they screwed up, don't rub it in. Just let them know, you know they screwed up.
4. There will be complications that will throw the best plans off schedule. Be able to roll with it.
5. The amount of time spent waiting for doctors to come through and give you an update can be numbing. But it is essential that you establish contact with them and the nurses so that you get the flow of information. We chose to be there every day waiting for the doctors to come through and give us updates because we felt it was the best way to ensure that Dad was getting the best treatment possible.
6. As you will see, the above lesson will come in handy when a medical problem turns into a medical crisis. Ours will be in lesson in how a medical situation turns into a crisis that almost costs my Dad his life and alters our family forever. If we can help even one family learn from our journey, we feel some good will come from our experience.
All my life I have had dreams while I sleep. Some in color, some in black and white. Sometimes I am flying, others seem to portend events that might come to pass, still others are just fun. I cannot recall a time when I haven't dreamt.
On the night of August 1st, in anticipation of being able to return to my home in Los Angeles, I dreamt of my husband Jon, our baby turtle, the Mighty Z and of his parents, Miss Dale and Stumpy. To date, it is the last time I have any recollection of dreaming.
My parent's house is not large. It is an early 1970s Ranch House with three bedrooms. If you cough in one room, you can be heard throughout the house. As we had just gotten Dad home from the hospital, I was sleeping with the bedroom open in case there was an emergency.
He was home from the hospital, joking with us and in good spirits. I thought I was prepared for any emergency. I was wrong.
About 5:30 am I woke up. He was calling for me. At first I thought it was dream. I have never been an early riser and am hardly what anyone would call a morning person. But that morning, realizing it wasn't a dream, I shot out of bed.
I hurried into my parents room. My Dad was sitting up in bed, complaining that he felt sick. I remember asking him where he felt bad. He said he had a lot of blood in his colostomy bag. I took a look. Not only was it full of blood but he was still bleeding, badly. I asked him how long this bleeding had been going on. He said he wasn't sure. I looked down in trash can next to his bed and there was a bag filled with blood. The first thing I thought of was: This is not good.
I told him we should call 911. He said no, go get some ziplock bags. He thought perhaps there was a problem with the colostomy. I ran to the kitchen and got some gallon size ziplock bags. We had to drain the colostomy bag before it burst. It wasn't easy. The smell alone would do you in. But, we worked together and got it drained.
By now it was a little after 6:00 am. I told him that this was serious and we had to call 911. By now my Mother was awake and scared. My dad agreed and I called 911. I told them that my Dad was bleeding out and to please send an ambulance. American Medical Response and the EMT Paramedics from the local Fire Station were soon knocking on our door. They assessed the situation and loaded Dad on a gurney. I told them that he had just been released from Valley Hospital the evening before. It was the closest hospital where both his heart doctor and his cardiac doctor had privileges. We were going back to Valley.
I followed the ambulance to Valley and into the Emergency Room. Dad is still bleeding out. I tell them he should still be their system as he was just released the day before. I give them a quick medical history. They try to get him stabilized. I call my niece, Serena and she rushes down to join me. Thus, begins our crash course in vital signs stabilization.
They begin to order blood transfusions for my Dad. As quickly as they put the blood into him, the blood flows out. His blood pressure is in the 70s and 80s and we learn this is not good. The ER team continues to try to get him stabilized. Dad, to his credit, is alert and talking with us. We hold his hands, try to reassure him and watch as the ER team does their jobs. The doctors are running tests trying to figure out what is causing the bleed out. The machine takes his blood pressure every 15 minutes. We begin to clock our day around those 15 minutes.
I call Jon and tell him I won't be coming home and why. Twelve hours fly by. You'd be surprised how quickly time flies in situations like this. They finally have him stablized and we are waiting for a bed in ICU.
Finally about 10:00 pm that night, a bed is available in ICU. We transfer him up there. They have an air bed for him and try to make him comfortable. He is hungry and thirsty. Only able to have ice chips. The doctors will run a number of tests, I am told, in the morning to see if they can figure out what happened.
I talk to his nurse, a wonderful woman from the South, who tries to make Dad as comfortable as possible. I leave the hospital finally around 11:00 pm. It has been a long day. I think the worst is over.
I am wrong. It is only just beginning.
I had gotten home the night before just before midnight. I had called Jon on the way home to give him an update. My mom and I stayed up for awhile talking. I took a phone to bed with me, thinking I would not need it. Just in case.
The call came at 5:50 am. It was the night time charge nurse. She was calling about my Dad. Something had happened. I was scared he was dead. She said that he had been stable since I had left just after 11:00 pm. That is, until about an hour ago when his blood pressure and heart rate crashed. Was he okay? Yes, he was okay but they had to put him on ventilator.
I woke my mom up and gave her the update, throw some clothes on and head down to the hospital.
He was, in fact, on a ventilator and he was still bleeding. Not nearly as much as yesterday but he was still losing blood. The shift change hadn't happened yet and his nurse said that one minute he was doing fine, waving at her and talking with her. She went to check on another patient and when she got back 15 minutes later he was in duress.
As we wait for the doctors to come through, the two respiratory techs answer our questions about the ventilator. One by one, throughout the day, the doctors come in and evaluate him.
The kidney doctor, Dr. Takiyudden, tells us that Dad's kidneys are in shock due to the blood loss and the fact that donor blood is high in potassium. They will start dialysis in the morning.
The gastro doctor wants to run a series of tests to see if they can pinpoint the bleed.
The respiratory doctor, Dr. Stuart, understands our concerns about the ventilator and wants to ween Dad off as soon as he is stable and ready.
Dad's previous primary doctor is on vacation and we meet Dr. Ibarheem, the doctor who will be the primary doctor for the next ten days.
It's not easy seeing Dad on a ventilator. He can't talk except through eye signals and hand squeezes. He is scared. It is his worst nightmare come to pass.
On Saturday, we think the bleeding has almost stopped. The catheter bag is not filling with any blood. The Dialysis tech comes. Dialysis takes about 3 hours. It is late in the day when we discover a kink in the catheter line. Dad is still bleeding, though it has slowed down considerably from Thursday.
Saturday night, he spits up blood. Serena and I sit with him all night, praying and holding his hands.
The ICU staff is getting to know us, partly because we are there so much. I take the day shift and Serena takes the evening and night shift. She is often there until midnight. We talk to him, explain what is going on, tell him that we love him.
We become familiar with the other families in the ICU. A father and daughter from Australia stop by whenever they are going for coffee or food to see if we need anything. The wife had a heart attack while they were visiting Las Vegas. I refuse to leave because I am afraid I will miss a doctor or something will happen while I take a break. They bring me food and Diet Coke and I am grateful for their kindness.
On Monday, the begin taking x-rays and I begin signing consents for exploratory procedures. Dad, hating the ventilator, takes the situation into his own hands and excubates himself. This is not the usual way to be taken off a ventilator. However, Dad is able to breath on his own and they put an oxygen tube in his nose.
Over the next few days they will do an endoscopy, the longer endoscopy, a colonoscopy and a myriad of x-rays trying to discover where the bleed is coming from. In the process, they discover that Dad has eight, previously undiagnosed, ulcers in his stomach, dueduodum and colon.
But by Wednesday evening, he is still bleeding and they don't know why.
Things I learned:
- Ventilators are scary. You are not prepared for the first time you see your loved one hooked up to one. But, DON'T be intimidated by them. Ask the Respiratory techs to explain the numbers so that you can tell how many breaths your loved one is taking vs how many breaths the machine has to give them. This ratio is important. The more breathing your loved one does vs the machine is good.
- Get to know the ICU nurses and staff. Get to know the Charge nurses. This is very important. Most work 4 day, twelve hour shifts (with time off for lunch) so the nurse you have, you will likely have for four days at any given time.
- Not all nurses are created equal. The sad truth is that in today's modern medicine, not all nurses are there because it is a calling. To some, unfortunately, it is just a profession. For others, they may be having a bad day and their attention may not be on the patient. You need a nurse who knows to leave their private live on the other side of the ICU doors.
- Don't be afraid to ask for another nurse. This is very important. If you don't feel the nurse is giving your loved one the care and attention he needs, speak to the Charge Nurse and ask for another nurse. Don't be shy about speaking up. Your loved one's life depends upon it.
- Be kind. Say thank-you. Alot. Every time someone comes in take a reading, do an x-ray, whatever, be polite, ask how they are and be sure to say thank you. Courtesy goes along way and you have no idea how long you will be in ICU and dependent upon these people. We had no idea we would be there for a month but we tried to be as polite as possible to everyone.
A note to Charge Nurses, Nurse Managers and Nurses everywhere:
When calling the patient's family:
If our loved one has not died, please lead off the conversation with the fact they are still alive and then proceed to tell us why you are calling. Any call we get from the hospital, our first reaction is Oh my God, he/she's dead! even if we don't say it out loud. You can help everybody's anxiety level by letting us know if they are still with us!
Dad is slowly oozing away as the blood continues to leave his body. The nurses continue to give him transfusions and plasma (looks like frozen orange juice) but still the bleeding won't stop and they are all at loss to explain it.
Finally, the radiologists are called in. This is a special team that specializes at finding bleeds like this. On Thursday, I sign the consent for the radiologist to go in and try to find the bleed. We are hopeful. After all, this is the A-Team.
They will do an angiogram. They will inject a "dye" through a thin, flexible tube. It will then be threaded nto the bowel from an access point. This "dye", properly called contrast, will make the bleeder inside the bowel visible on an x-ray. It is intricate work and with 20 feet of bowel, the odds are not on our side that the bleeder will be seen.
I call down to the hospital late that evening and ask about the results. They could not find the bleed.
The next day, Friday, Dad is slowing bleeding away. I call Jon and tell him he should prepare for coming home as I don't know if Dad will make it.
Dr. Ibarheem calls in another radiologist to take another look. We hold our breath. He, too, cannot find the bleed.
The blood keeps oozing out but Dad refuses to give up.
We are in limbo not knowing what will happen next .