Another Day, Another Visit to the ER

I am not making this up.

Soap opera writers are starting to call me for story ideas. I expect my evil, identical twin to show up any minute now. (Okay, that part I'm making up.)

Many thanks to Richard's brother, Jim, who spent his
afternoon in the ER with Richard

Richard normally has swelling in his lower legs. He wears compression socks to manage it and recently ordered one of those nifty compressor machines that hospitals use because we noticed his legs were getting a bit more swollen than usual.

And who doesn’t want more medical equipment in their house?

Before getting this handy new device, Richard’s legs swelled up overnight and turned a horrible color of reddish purple. Not a bad color for the walls but on legs, not so much.

Oh, then he had excruciating pain in his upper thigh.

Here’s a tip: Do not Google these symptoms. Especially don’t click on “images.”

I did and Richard’s legs (and worse) were staring at me from my screen. 

Coincidentally, he had a follow-up with his pain management doctor this morning who suggested he immediately see his primary doctor for an ultrasound.  The pain management doctor called the primary doctor who, once Richard was back home, called Richard to tell him to go to the Emergency Room which is actually five minutes from the pain management doctor. Good thing Richard had driven 20 minutes back to the house. . . 

(I don’t understand why there wasn’t a directive by the pain management doctor to go directly to the emergency room but I’m tired of trying to figure out why he does the things he does.)

The suspicion was Deep Vein Thrombosis which could have been a result of his recent hospitalization. The doctors were all almost certain he had a blood clot so he had blood work taken, x-rays done and, finally, an ultrasound.

For those counting: Richard and Robert have both been in the ICU this month and Richard can now add another visit to the ER.

Three trips and/or stays in the hospital. This month.

This equals about 3,467, 989 trips from home to work to hospitals back to home to pick up Robert and back to the hospital. 

I know there are people who have it much worse than we do and I am not trying to be ungrateful, but I can’t help but think:

ARE YOU FREAKING KIDDING ME, RIGHT NOW?

Thankfully, the ultrasound did not show any signs of a blood clot.  Richard had his water pills increased and was told he had severe edema and to follow up with his primary care physician. 

Richard is home now and was well enough to play with the dogs and assist with Robert.

Which is a good thing because I am busy preparing for the exorcism . . . 

Grateful for Great Care

Some people review restaurants, movies, cruises or even shopping experiences.

Me, I think I could make a career out of reviewing hospitals.

 

Robert on the mend in the MICU

Robert has been hospitalized three times over the last year and a half – all at the UC Davis Medical Center.  (He has also been to the emergency room of another hospital for a couple of falls when he lived at New Home but those were not overnight stays.)

I have come to expect great care from the UC Davis Med Center and I couldn’t be more grateful. 

When I changed Robert’s primary care physician from the New Home “doctor” (yes, I used quotes) to a UCD Health System physician, I didn’t know what to expect.  I was concerned because Robert is not a private pay patient – he is on MediCal and Medicare so I wondered what type of care he would get. (A stereotype I had in my head that I am not proud of.)

When we first visited this doctor, though, I thought I had hit the jackpot. She was kind; she listened to me about Robert and even wrote down the name of an online shoe store that she loves.

Now that’s my kind of doctor.

When she went on leave and Robert had to see other physicians, I never expected to get that same level of care. Again – wrong! Robert has seen two other doctors and both have been thorough and caring (although no one else has given me tips on where to get great shoes).

One of them even explained that she had read Robert’s records before our appointment but wanted to read them in more detail after meeting with us and politely asked if we could wait.

Um, you read his records and you want to read more?  Oh yes, we’ll wait. We will be happy to wait.

As a comparison, for years I felt like I was meeting my own physician for the first time each time I had an appointment. (My doctor is through a different medical group.)

There are many reasons I am grateful to the UC Davis Medical Center and I want to share what they are doing right!

Robert’s first bout of pneumonia and sepsis landed him in the UCDMC for a week.  He was in a regular room and the nurses were all terrific. My husband or I stayed with Robert during the day and through the shift changes to be sure there was a smooth transfer of care but it always went seamlessly. 

Round two of pneumonia and sepsis happened last April and, while I was still grateful for the good care he received, there were hiccups. An ER nurse didn’t even look at me while I talked to him (much less listened to me) and actually gave Robert a duplicate of a seizure medication I had already given him at home an hour before. (He was a better listener after that incident but I was/am still bitter about it.) 

During that stay, once Robert was out of the MICU, he was moved from room to room on a daily basis until he was discharged.  I never could connect with his doctor until I had the nurse call the doctor and I talked with her on the phone.  Even she didn’t listen to my concerns! Note to medical professionals:  LISTEN TO THE CAREGIVER!  (Phew – just had to get that out.)

Robert’s most recent hospitalization was a dream come true (well, except for that whole pneumonia and sepsis business). 

The personnel in the emergency room (nurses, doctors, x-ray tech) were fantastic. They asked questions. They were concerned and caring. They were respectful of Robert and me and my husband.

They listened.

They actually made me feel as if I was a member of the team caring for Robert. Which is awesome because I am. 

The decision was made to transfer Robert to a regular room which seemed reasonable to me based on his vitals.  The nurse caring for him on the regular floor kept a close eye on him and very quickly realized he was going downhill.  She notified the right people and we had a rapid response doctor looking at Robert and then calling the MICU team for evaluation.

It was obvious the systems in place for quality patient care were working properly. There are protocols in place which were followed to the letter as far as I could tell.

Robert was transferred to the MICU in short order where the great care continued.  The team of doctors who visited Robert actually talked with me each day and asked questions as well as explained what was going on.  (By contrast, the team in April discussed each patient outside the patient room and I had to try to eavesdrop to get any real information.)

Robert was moved back to a regular room once he was stable enough. He stayed in the same room for several more days which I think is a very important part of his recovery.  He had fantastic care from the nurses and I was able to talk to the doctors who had been involved in his care from the beginning when he was admitted to the emergency room. 

One of the most important aspects of Robert’s care at the hospital, and one for which I am extremely grateful, was the willingness to adhere to his medication schedule.  I get it – it’s not easy since Robert has seven times throughout the day he is getting medication.  One of the first things I do when Robert is hospitalized is hand out a copy of a one page contact and medication schedule – to the ER personnel, to the nurses once he is in the MICU then again to the nurses once he is in a regular room. Everything you need to know about Robert is listed on this sheet of paper (except the fact that he loves Family Feud and Jeopardy). 

When he was hospitalized in April, Robert was not kept on his regular medication schedule no matter how many people I gave the med list to or how often I went through it with then nurses. The nurses actually told me they weren’t able to adhere to his regular schedule. I wondered how we could evaluate his progress if his medication schedule was not kept the same (I don’t even think they gave him all of the medications he was supposed to have). If he doesn’t get better or develops a new problem how can we determine if it’s the bacteria or a new problem or because his medications were changed?

I was concerned the same thing would happen this time so asked one nurse if she needed me to go over his medication schedule. While I was offering to give her the medication list and schedule, she produced a copy of it and asked if it was what I was about to give her. The nurse who had been with Robert before her had given her a copy.

She acted like it was the most natural thing in the world to listen to the caregiver.

Oh my god. I almost hugged her. (Instead, I thanked her profusely.)

Robert eventually improved and was discharged after the doctor and I talked at length. I was also contacted by the discharge coordinator and told Robert qualified to get physical therapy at home. In the three times he was hospitalized, this was the first I had heard of this and was thrilled when she told me it might take a few days to set up but that he could have it at home. Fantastic! Sign us up.

Robert has beat pneumonia and sepsis not once, not twice but three times.  I am well aware this is nothing short of a miracle considering sepsis is the leading cause of deaths in US hospitals. 

Robert may have been given a miracle (or three) but I know that much of that miracle is due to the outstanding care he received at the UC Davis Medical Center, especially during this most recent visit. 

To the doctors, nurses, physical, speech and respiratory therapists and staff as well as administrators (for developing and implementing those helpful protocols):

Thank you from the bottom of my heart. 

And, to share Robert’s words (words he repeated to every single doctor, nurse, technician, therapist and custodian who came into contact with him whenever they left the room):

“Goodbye and God Bless You.”  

Sepsis: What to Know

In the last 15 months, Robert has had pneumonia and sepsis three times.  He was hospitalized in May 2012, April 2013 and just recently, September 2013.  In Robert’s case, these seem to not only go hand in hand but come on quickly with little to zero warning.

During Robert’s bout with pneumonia and sepsis this past April, he actually went into Septic Shock.  His blood pressure dropped so low the medical personnel in the Emergency Room had to start a central line (an IV in the neck) and give Robert Norepinephrine which treats low blood pressure but needs a big vein to go into.

Sepsis scares the heck out of me since it is so serious and seems to come on so quickly.  Fortunately, we live in an area where the teaching hospital Robert goes to for his medical care has made “reducing deaths from severe sepsis and septic shock an institutional priority.” 

In April, we were asked if Robert would participate in a research study aimed at protocols of care for early septic shock. Robert has volunteered to be in numerous research studies over the years for various epilepsy drug and medical devices so I knew he would want to participate in this study. He was not able to consent but since I have Durable Power of Attorney for him, I consented on his behalf.

Once Robert was alert enough, I told him he was in a study to help other people with septic shock.  He was happy to help.

Because Robert seems to be susceptible to pneumonia and sepsis, I have researched both and been given information by the hospital.

I also learned that September 13 was World Sepsis Day and September is Sepsis Awareness Month (who knew?).

As caregivers, the more we know about sepsis, the better prepared we can be in order to advocate for our loved one with a diagnosis of sepsis. (The following information was gathered from several sources.)

What is sepsis?

1.     A reaction to an infection throughout the bloodstream.

2.     Sepsis does not occur by itself; it is a reaction to an infection (such as pneumonia, urinary tract infection or even Appendicitis);

3.     Bacterial infection is the most common cause but sepsis can be caused by a viral or fungal infection as well;

A few facts about sepsis:

1.     Sepsis is the leading cause of death in U.S. hospitals;

2.     750,000 Americans per year will get sepsis;

3.     Between 28 and 50 percent of people with severe sepsis will die (more than U.S. deaths from prostate cancer, breast cancer and AIDS combined);

What are the symptoms of sepsis? (Be aware that while many symptoms can be the same in both children and adults, there can be differences)

Symptoms in Children:

1.     Fever or low body temperature;

2.     Chills;

3.     Fast heart rate;

4.     Breathing changes;

5.     Skin rash;

6.     Less urine output;

7.     Confusion, lethargy;

8.     Nausea, vomiting;

9.     Shaking;

10. Warm skin;

Symptoms in Adults:

1.     Fever or low body temperature;   

2.     Chills;

3.     Fast heart rate;

4.     Rapid breathing;

5.     Skin rash;

6.     Less urine output;

7.     Confusion or light-headedness;

8.     Cool, clammy skin or red flushed skin;

I have found with Robert he develops a skin rash, is confused and usually too weak to stand on his own, has a fever, high pulse rate and low blood pressure. This last time in the hospital he also developed severe shakes which was quite unnerving to see.

Unfortunately, many of these symptoms are symptoms of less severe conditions so it can be difficult to tell if this actually indicates sepsis. It is best to contact the doctor when these symptoms occur or go straight to the emergency room to be on the safe side. 

Treatment of sepsis:

1.     It’s important to start treatment for the infection as soon as possible before the sepsis becomes so bad that it causes organ failure.

2.     Often, the treatment will be in the Intensive Care Unit with a broad spectrum of antibiotics to treat the underlying infection;

3.     IV fluids as well as oxygen is also often used in treatment of sepsis;

Because Robert has had pneumonia and sepsis several times, Richard and I know how this develops in him. Robert gets congested, he develops a cough and runs a fever. By this point, I have taken him to the doctor and he is put on antibiotics. His symptoms clear up but then strike again and in lightning speed his blood pressure drops, he runs another fever and he becomes weak and confused.

Because pneumonia is the culprit each time, his doctor is trying to figure out the cause. Robert has undergone testing and sees a lung specialist next month.  In the meantime, we are on the lookout for lingering pneumonia and its unwelcome companion, sepsis. 

I realize this information about sepsis may seem scary but the more information we have as caregivers, the better advocates we can be for our loved one.

Please share your experience with sepsis in the comment section.

Robert’s Turn in the Hospital

October cannot come soon enough.

My husband, Richard, was in the hospital for four days after Labor Day (most spent in the ICU), thanks to an inadvertent drug overdose by his doctor.

 

Robert when he was in the ICU - feeling better!

Robert was pretty sniffly that week and I half-joking said to my daughter that Robert was going to end up in the hospital by the following week.

DEAR UNIVERSE: I PROMISE NEVER TO JOKE ABOUT THAT AGAIN!

By the time Richard was home and recovering, Robert’s sniffles turned into a cough. I took him to the doctor on Friday who prescribed antibiotics but by Friday evening, he was pretty sick. I slept on the family room couch (in Robert’s room) and woke up every two hours to take his vitals.

He has had pneumonia and sepsis before so I knew what to watch for: extremely low blood pressure and high pulse rate. His pulse rate was high but the blood pressure remained in the “okay” range.  Robert’s fever spiked around 2:00 a.m. and I debated about calling the paramedics but the fever came down with Tylenol.

Through the night, his congestion worsened and his lungs sounded awful.  I tried to get him to cough up whatever was in there and by morning, even had him get up to get cleaned up. He was weak but not as bad off as he was last April. 

When Robert is sick, he progresses to “oh crap” very quickly so I called the paramedics and got ready for their arrival. Richard and I sat Robert in his walker in the front room, making it easier for the paramedics to access him. I also got my handy cheat sheet ready to hand to the EMTs.

Robert was in the Emergency Room for a few hours and sent for x-rays. Once he got back from x-rays, his blood pressure started dropping and he was significantly less alert. I notified the staff about the difference and they gave him more fluids while preparing to send him to a regular room.

Once Robert was transferred, it didn’t take long for the nurse to realize he should be in ICU. She called the Rapid Response team who called ICU and he was transferred again. 

All the while, I am talking to the staff about their protocols and what constitutes “sepsis” (a blood pressure with the systolic number below 90 is one trigger for a diagnosis of sepsis).  I am no nurse but I do want to know what to watch for at home and want to add to my “advocacy arsenal” for the future.  So I take notes and listen and soak up as much information as possible.

Robert was in the ICU from Saturday afternoon until Monday mid-morning. He is now in a regular room and will most likely be in the hospital the rest of the week.

I know he’s feeling better because he is asking for a chocolate shake! He is still on a clear liquid diet but as soon as he can eat regular food, we will bring him his favorite drink.

Richard and I have been taking shifts at the hospital so we don’t miss any information from the doctors or respiratory therapists. Robert is not a reliable self-reporter so it’s important we are there to let the nurses and doctors know if he’s having any problems.

(No matter what, Robert will say he is “excellent” when asked.  That’s not exactly helpful or accurate when he’s lying in the ER with a fever of 102 and pneumonia.) 

I think we all need scorecards to keep track of what’s happening so here’s a recap:

Richard was in the hospital four days; Robert has been in for five days so far for a total of nine days spent in the hospital this month and counting;

Robert has had pneumonia and sepsis three times in sixteen months (twice in the past five months);

Our puppy has torn up countless newspapers because he’s confused why his routine is messed up; Where’s Dad? Where’s Robert? Where’s Mom?

Robert is several days behind on eating Rocky Road ice cream and chocolate shakes.

Me? I’m going to have a spa day every day for a month when this is all over.