Back to Excellent!

Actually, if you ask Robert he never left excellent. Richard and I, on the other hand, saw him go from his usual excellent self to sounding very croupy and congested to running a fever, wheezing, coughing up yukky stuff and barely able to stand.

It all happened very quickly!

Robert had a bad bout of pneumonia in the spring of 2015. We kept him home and treated him with the help (over the phone) of his wonderful pulmonary nurse, Lana. Robert was pretty darn healthy until last October when he had similar symptoms but not as severe.

That’s a really good run for him, considering a few years ago he was hospitalized two to three times a year for pneumonia!

He always has a lot of nasal and chest congestion so I am constantly on “pneumonia-watch.” We do everything we can to keep his lungs healthy – kind of like exercises for the lungs! We have an acapella device which he uses several times a day. We have an inhaler, a nebulizer machine and a humidifier. We encourage him to cough (which he hates to do and will turn red holding in a cough) and have him walk around the house with his walker to get some exercise.

Because of his seizures, he is prone to aspiration pneumonia so I also brush his teeth and take him to the dentist for teeth cleanings three or four times a year.

At his last pulmonary appointment, the doctor asked what I do to prevent aspiration pneumonia. I rattled off all of the above but forgot to mention the extra dental care which I think is probably the most substantial contributor to his reduction in pneumonia. (Typical to forget the most important point when talking to a doctor!)

Richard and I are committed to keeping Robert out of the hospital when he gets sick and his pulmonary team agrees completely. His doctor has prescribed antibiotics for him which I keep at home in case he goes downhill fast (which, of course, invariably happens over a weekend). I am reluctant to use these unless it is absolutely clear that he needs them. Robert is already resistant to several antibiotics and he doesn’t need to add any more to that list.

When Robert is sick we work closely with his pulmonary doctor and that fantastic nurse, Lana, mentioned above. Lana keeps in daily contact with me, listens to my concerns and we discuss, as a team, whether it is time to take him to the hospital. Our goal is to keep him out of the hospital but we have to be on the lookout for sepsis and septic shock which can be fatal. (I watch for a very low blood pressure, high pulse rate, extreme sleepiness and shivering.)

We cannot mess around!  

I know it sounds like I am anti-hospital but I will take Robert in to the hospital if needed. It is just that there is such a decline when he is hospitalized and it takes so long to get back to his regular baseline. Actually, I don’t know that he ever really gets back to his baseline. It’s more like he declines and recovers but only up to a new, lower baseline.

That is why we work so hard to keep him out of the hospital when possible.

Last week, Robert got sick very quickly. He sounded “froggy” for a few days and was a little grumpy at Day Program which is out of character for him. Then the fever hit, the deep, horrific cough and high pulse rate. After consulting with Lana, we put him on the antibiotics which have been known to work in the past for him. His pulmonary doctor is fairly new to Robert and after a day of being on the antibiotic that works for him decided he should be switched to another one that has not worked in the past. I agreed to try it but Lana and I discussed it and I told her I would switch him back if he didn’t improve or if he got worse.

This was Friday. By Saturday evening, he was much worse and I thought if he didn’t improve we would be going to the ER in the middle of the night.

I switched him back to his other antibiotic and checked his vitals through the night.

Thankfully, Robert’s fever went down and on Sunday he seemed better than he did on Saturday but he was still pretty sick. It took both Richard and I to stand him up and we used the transport chair to get from his bedroom to the bathroom (about 10 feet). Robert was foggy-headed and couldn’t get his legs to turn or stand straight so we ended up giving him quick baths while he sat in his shower chair.

Pneumonia is not only the worry when he’s this sick but falls are a real concern.

I worked from home Monday and Tuesday so there would be two of us moving him and getting him out of bed, to the toilet and then back in bed. Robert slept a lot!

Robert may get grumpy when the illness is starting to work on him but once it takes hold he is even more polite and sweet than normal. In fact, he woke up with the fever on Friday but Thursday evening he was extremely polite. Really polite. Richard and I looked at each other and said, “This is not good.”

Sure, we like him to be polite but when his politeness goes to another level we know we are in trouble!

When he was sick and lying in bed and I was taking his vitals, Taz was snuggled next to him in bed. Robert started petting Taz’s head and telling him he was such a good boy and then said, “I love you very much, Taz.”

Ha! We have come a long way from Robert being irritated with Taz and shouting “he is touching me!!”  

We had several days of letting Robert sleep, using the oxygen on him, letting him eat in bed (Taz had to leave for that part) and taking vitals every few hours. By Monday, we got him to the table to eat so he was sitting up and moving around a little. We needed to break up all the junk in his chest.

Robert has had sepsis before and has even been in septic shock. I suppose I shouldn’t be surprised that he miraculously survived every time. The man is a walking a miracle, after all. Because of this experience and subsequent research, I know that mental confusion and low urine output are also signs of sepsis. However, I am also aware these are signs of dehydration as well.

By Tuesday, he couldn’t sit up on the toilet and was leaning either far forward or far to the left. We had to literally hold his body up so he wouldn’t fall over. His briefs weren’t nearly as wet as usual and he was confused – not knowing his basic routine or understanding simple directions.

Is it sepsis or is he dehydrated? I called Lana and we talked. Richard and I talked. We were all concerned. Lana talked to the doctor who advised we should take him to the hospital.

I waited it out for a few hours and pushed a lot of fluids in him. He isn’t supposed to use straws because of his swallow disorder but he could barely hold a glass so we used a straw (you just have to do what you have to do sometimes!).

Thankfully, he improved as the day progressed. He continued to improve through the week but was pretty weak and still a fall risk. I was able to go to work on Wednesday and Richard stayed home with Robert. Richard has his own leg infection he’s dealing with so had a couple of appointments he couldn’t miss. I am very grateful we moved closer to work because it allowed me to drive back and forth the rest of the week.

I actually have a lot to be grateful for!

First and foremost: Richard. If Richard and I were not both able to care for Robert, he would have had to go to the hospital – no question. There is no way either one of us – alone – could physically assist a 220 lb. guy with standing or transferring to his bed.

Next up: Lana, the pulmonary nurse and case manager extraordinaire! Without her care for Robert and confidence in me, as the caregiver, Robert would have been in the hospital.

Honorable mentions: Our daughter, Rachel, who is a wonderful emotional support and knows how to give us some comic relief! My best friend, Joelle, who runs interference at work when I am not in the office all while handling her own challenging job. Richard’s mom who calls to check on Robert and who fervently prays for him to get better. Our fellow caregiving friends who check in on us daily to see how we are and how Robert is doing. In fact, one even sent us a Prayer Angel a while back which we have been using for both Robert and Richard!

I am also grateful for an employer who allows me the flexibility to work from home when it is absolutely necessary. Although, I did realize that I would much rather work from home all the time! I mean, it’s very hard to compete with a home office that comes with Puppy hanging out with me and sleeping on the office couch.

Lastly, I am grateful for Robert. He is a good patient, even when I am frustrated he can’t respond to my directions. He keeps his joking attitude even when my brow is furrowed with worry and I can’t laugh along with him.

There will come a time when he will have to go the hospital and I will be okay with that. I absolutely know that Richard and I have done our very best. We definitely gave this round our all and if this bout of pneumonia is not completely gone then he will have to go to the hospital.

For now, though, after 10 days of Robert being sick I am prepared to say he is pretty much back to normal – okay, let’s say excellent. Robert says he is doing “excellently great” and the plan is to resume our usual schedule in the morning and send him back to Day Program.

Fingers (and toes) crossed!

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Despite my best efforts to keep Robert from getting my cold (which I got from Richard, by the way), Robert got sick.  He was congested for a few days then it hit in full force and last night Robert was wheezing and shivering which usually means a temperature is about to break out and pneumonia and sepsis are not far behind.

Credit: World Sepsis  Day Organization

There is always a concern of pneumonia and sepsis with Robert since he has weak lung muscles (part of his overall weak muscles and, yes, this is all due to a lifetime of uncontrolled seizures).  Robert is unable to get a good cough to get the congestion out of his lungs.  It just sits there brewing bacteria.  Then it turns into pneumonia, (usually with sepsis) and Robert is in the hospital in no time. The hospital stay leads to a decline and it takes forever to get Robert back to baseline. 

We have to stop this downhill ride as soon as we can.

When Robert is sick, I take his vitals at least twice a day.  Signs of sepsis include fever, high pulse rate and low blood pressure so I am on the lookout for these symptoms.  We keep a log of vitals so I know what his usual stats look like.

Robert’s pulmonary doctor agrees (his GP is a little less aggressive in his treatment so happily punts to the pulmonary doctor). The plan we developed with the pulmonary doctor is to put Robert on antibiotics early so that his colds do not develop into pneumonia.

Of course, colds never happen during regular doctor’s office hours.

While getting Robert ready for an early bedtime and dinner in bed, I called the doctor’s office and left a message for the GP on call (sometimes I call the pulmonary doctor’s service first but occasionally I start with the GP).  Robert’s doctors are very good about returning calls quickly and this wasn’t any different.

Since the doctor calling me back most likely doesn’t know me or Robert, I try to establish very early in the call that I know what I am talking about.  I am so adamant about not taking Robert to the hospital unless absolutely necessary, I don’t want to be dismissed.

I give a brief history of Robert’s pneumonia and sepsis, my reluctance to go to the hospital due to that causing a decline (I have yet run across a doctor who disagrees with this), rattle off his vitals and any other symptoms (labored breathing and shivering for instance).  Then I ask for antibiotics. 

There is usually hesitation which I completely understand.  However, Robert is not a healthy, young man who might become resistant to antibiotics when he is ninety. He is already resistant to a few antibiotics. It is more of a risk not to put him on antibiotics. 

Still the GP hesitates. They have to look at the chart, they have a policy against prescribing antibiotics until there’s a fever, they want me to wait until morning.

Deep breath.

I explain Robert has a pulmonary doctor and would they mind if I called that exchange as they have prescribed antibiotics in the past.  I’m not really asking permission but I do want to give them a courtesy “heads up” that I am going up the chain. 

They are usually more than happy to have me do this.

So I start over with the pulmonary doctor after hours number.  Run through my pitch for antibiotics and get them. 

Last night we were up against a deadline: the pharmacy was going to close soon. Yikes!  I need these antibiotics!

I was thrilled when the on call pulmonary doctor was Robert’s own doctor!  Woohoo!  I didn’t have to make my plea – I just had to give him the phone number of the pharmacy and tell him the last antibiotics that worked for Robert.

Hospitalization averted!  (At least everything has been done to avoid a hospitalization.)

We just wait for the antibiotics to work and for Robert to feel better.  I talked to Robert tonight to see how he was feeling and he said he is feeling a lot better now.  He then tells us about other people helping him and has a special message for Bowen – apparently someone who helped him out today at Day Program. 

Goodbye September – It’s Been . . . Memorable

September has been quite a month (although, it is not at all unusual for caregivers to have weeks/months/years like this – and worse - unfortunately).

Enjoying a "normal" day

Let’s recap:

September 1:  Richard, Robert and I decide to go to a movie! The tickets were cheap, the popcorn was pretty tasty and the movie wasn’t bad at all.  What a fun way to start the month!

September 3, 7:00 a.m.:  Richard opens the front door for his routine intrathecal pain pump refill appointment which happens every 45 – 60 days. The puppy escapes and Richard and I chase him back toward the house.

September 3, 7:05 a.m.: The puppy escapes again just before I am able to get him back in the house. (I note that Taz is aptly named.) Finally, we are able to get him back in the house. (For real this time). Richard leaves for his appointment.

September 3, 7:10 a.m.:  Robert and I finish getting ready for work (me); and Day Program (Robert). We wait for Robert’s van to pick him up.

September 3, 7:45 a.m.: Robert leaves for Day Program and I leave for work. The puppy does not escape.

September 3, 2:30 p.m.: I leave work to go to a doctor appointment because I have been feeling dizzy. The doctor thinks it’s vertigo but wants to do an EKG to be sure. 

September 3, 3:15 p.m.:  While waiting for the EKG person, Richard calls me. He is groggy, slurring his words and tells me he’s in the hospital. He cannot give me any other information.

September 3, 3:16 p.m.: I leave the doctor’s office, briefly telling a random person I have to leave (I assume she worked there).  I realize Robert is going to be dropped off after Day Program in about ten minutes and Richard will not be there.  I call the transport company as I am racing home to explain why I might be late.  My phone is about to die so I cannot call the hospital until I get home.

September 3, 3:35 p.m.:  I call the hospital and am told Richard is in the ICU – my heart drops. I talk to a doctor while getting Robert from the van to the house. I find out he was inadvertently overdosed with 40 cc of Fentanyl during the “routine” pump refill.

Oh and no one from the pain clinic, the ER or the ICU called to tell me.

September 3, 4:00 p.m.:  I explain the situation to Robert and tell him we have to go to the hospital. He has to use the bathroom but finishes in record time and we rush off to the hospital.

September 3, 4:30 p.m.: Richard is lying in the hospital bed, completely passed out. Robert quietly sits in a wheelchair working on his puzzle book while I get an update from the nurse. Richard’s mom and one of his brothers come to the hospital; our daughters come to the hospital; our son is calling from North Dakota (acting like a tough guy but obviously scared). Richard’s other brother (who lives a couple of hours away) calls several times then makes the decision to come up.

Yeah, we’re worried.

September 4, morning:  Richard is still in the ICU on an IV of Narcan which is the antidote for this drug overdose. He is able to talk to us but is completely miserable and in pain (his head hurts and his back hurts. Oh right - there’s no medication in his pump since it all went into his abdomen).

September 4, afternoon:  The doctor decides to take Richard completely off the Narcan. Within less than an hour, he is unresponsive and his eyes are rolling in the back of his head. His mom and I (and the nurse) all try to wake him up.  The doctor rushes in and immediately starts the Narcan again. I’ve never seen Richard’s mom so scared.

September 5: Richard is slowly weaned off of the Narcan.  He is in extreme pain and horrible discomfort but there is hope he will get moved to a regular room soon.

September 5, 7:00 p.m.:  The girls and I and Robert leave the hospital to get some dinner. I park in the handicap space but forget to hang my placard and, yep, have a $450 ticket waiting for me when we return to the car.

September 5, 11:00 p.m.: I’ve long since left the hospital to get Robert home and ready for bed. Richard is moved to a regular room. I’m still cursing the dang ticket but am too tired to go online to appeal.

September 6: Richard is able to be discharged! His pain is still awful but the withdrawal symptoms have subsided.

Oh, it’s also Robert’s birthday and our 16^th wedding anniversary. Before going to the hospital, I took a birthday cake to Day Program for Robert so he would have a celebration with his friends. Happy birthday, Robert! Happy Anniversary, Richard!

September 7: I appeal the parking ticket and have charge reduced to $27.95 for “administrative” fees.  Otherwise known as “we want you to remember not to be an idiot in the future” fee. 

September 11: Richard has an MRI dye study done on the pump to be sure it is working properly. He also has the pump refilled to alleviate his pain (by the head doctor). This time, the medication goes in the pump like it’s supposed to.

September 12: It’s Richard’s and Other Brother’s birthday! Richard and I go out to dinner with one daughter (Rachel) and Robert.  Before leaving for dinner, Robert has an unusually long seizure with several minutes of confusion. Richard gets sopapilla for dessert and is a happy guy!  (Robert loves it too.) Happy birthday, Richard and Other Brother!

September 13, morning: Robert has had nasal congestion and a cough for about a week.  I take him to a doctor appointment and she starts him on antibiotics. His chest x-ray is clear.

September 13, (throughout the night): Robert has gone downhill all day so by bedtime, I wake every two hours to take his vitals.

September 14, morning:  We call the paramedics to get Robert to the hospital.  His behavior and symptoms are the same as the last two times he was hospitalized for pneumonia and sepsis.

September 14, later that morning: Robert is diagnosed with pneumonia and sepsis, surprising absolutely no one.

September 14, noon: Robert is transported to a regular room where he goes further downhill.  He is transferred to the MICU.

I let a morbid thought in: can he survive a third bout of pneumonia and sepsis within 16 months?

September 16: Robert is doing well so is transferred to a regular room. I ban all future morbid thoughts – Robert is a walking miracle.

September 17, 3:00 p.m.: I stop at the grocery store after working part of a day and before going to the hospital. I slip and fall and land on all fours (knees and hands).  My ego suffers the most damage.

September 18:  Today is daughter Caty’s birthday! Happy birthday, Caty!

September 20, 5:00 p.m.:  Robert is discharged from the hospital!

September 21: It has been 14 years since my mom died. I think about her frequently throughout the day.  (Truth be told: every day.)

September 26:  Richard’s leg is swollen much more than usual and extremely red.  He is complaining about his vein hurting in his upper thigh. His doctor sends him to the ER where everyone thinks he has Deep Vein Thrombosis.  The ultrasound does not confirm this and he is sent home with instructions to follow up with his PCP and a whole lot of Lasix.

September 29: The extended family celebrates all the September birthdays at our house. There is too much food, lots of noise and even more laughter. Things seem . . . back to normal (if you don’t count Robert’s lingering cough and Richard’s legs still looking like tree trunks).

It’s “normal” enough so I will take it.

September 30, 11:00 p.m.:  I wake up to Richard in the bathroom trying to stop one of his legs from gushing blood. He had scratched his leg and it spewed blood like in a bad horror movie. We finally were able to get the leg wrapped with several bandages and elevate his leg. We decide a trip to the emergency room is not needed but will call the doctor first thing in the morning.

October 1: Hello, October! I don’t know what to expect but after our September, know that we will get through whatever is thrown at us.  

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.

Dos and Don’ts for Medical Professionals: A Caregiver Perspective

I am very grateful for the care Robert received in the hospital last week but, unfortunately, there were varying degrees of attentiveness and competency.  Much of his treatment and care was wonderful and appreciated but there were a few instances that left me scratching my head (or addressing the problem immediately).

 

Robert doing his Physical Therapy

I don’t dispute the stress doctors and nurses must be under with their long shifts, the hospital bursting at the seams with patients and the high ratio of patients to nurses and doctors but do believe there are a few things that could improve.  Admittedly, these suggestions and experiences are based on one week-long visit in one hospital but I suspect these could be universal.

DO:

1.     Acknowledge the caregiver.  The most welcome question I received all week was, “Are you his caregiver?” Yes!  Yes, I am! Thank you for asking!  I’m sure my face lit up when asked this question because it indicated to me this was someone who knew the importance of the caregiver and the vast amount of information I may have about Robert’s history and his “baseline” behavior and health.  Unfortunately, the nurse who asked this only cared for Robert toward the end of his stay.

2.     Keep the medication schedule the same.  This is a tough one because I know it creates extra work for the nurses but I think it is critical in patient care.  Many of Robert’s meds are written as “3x day” but he is on a very specific regimen for various reasons such as certain drugs shouldn’t be taken with other drugs and some meds need to be taken with meals and some thirty minutes before a meal (another reason my checklist comes in handy!).  We have a very specific schedule we follow at home and if the goal is to get the patient well and to solve whatever medical mystery they currently have, why not keep as many variables the same as possible?  Robert was extra lethargic during his hospital stay – was this because of the pneumonia, his lack of activity or the medication schedule being changed?  The change for Robert wasn’t even consistent because he got moved around a lot.  It all depended what floor he was on and what the nurses were willing to do.   

3.     Communicate with the family.  During Robert’s hospital stay last May, I was familiar with each member of his medical team (Robert goes to a teaching hospital so there are a group of doctors who see the patients).  The doctors were communicative and available and answered every one of my questions.  This time, perhaps it was because Robert started in the ICU or because he was frequently moved to new rooms, but it was next to impossible to talk to his doctor.  In the ICU, I learned to eavesdrop on the team who would discuss his case in the hallway outside his room.  The doctors were all terrific but they rarely came into the room or gave me time to ask questions about what was going on.  Once he was moved to a regular room, I actually had to have the nurse ask the doctor to call me since I never saw her.  Aside from one day when I had to see the dentist, I was always at the hospital before 7:00 a.m. The rounds were supposed to be between 7:00 – 9:00 a.m. but I only saw the doctor once and that was on the day she released Robert.  Any information I did get was from asking the nurses or when I insisted on a phone call from the doctor. There may not have been anything new to tell me but I don’t know that if someone doesn’t tell me!

DON'T:

1.       Make assumptions.  As much as computers are helpful in having the patient’s medical history available as well as what treatments and medications have been given, mistakes still happen.  Twice I had to stop a nurse from giving Robert medication because he had already taken it.  Once, the ER nurse was ignoring what I was trying to tell him and he gave Robert an extra dose of Depakote (and then tried to blame me).  Another time a floor nurse was covering for the regular nurse who had left for break and she tried to give Robert the same medication he had been given an hour earlier.

2.      Play musical beds.  Robert was first in the ER on Friday and was transferred within hours to the MICU.  By Monday, he was moved to the telemetry floor (where they still continuously monitor vitals).  He was moved twice more before being released.  I was told numerous times the reason for the constant moving of patients is because the hospital was packed.  If the ER was full, they had to make room for those being admitted.  Patients were wheeled from room to room on a daily basis.  The downside to all this moving is the nurses do not get to know their patients which can hinder their ability to see a subtle change in health. 

3.       Say, “As I’ve already told you.”  Really?  Maybe I’m repeating the question because you didn’t answer me the first time or I didn’t think you understood my question so I rephrased it or gave you additional information.  I heard this from the difficult ER nurse and from the doctor assigned to Robert.  It’s arrogant and dismissive – please stop saying it.

While I try to be a helpful and grateful caregiver working on behalf of Team Robert, I would appreciate it if the doctors, nurses and hospital remembered we are on the same team.  After all, we have the same goal: a healthy patient and to be able to go home. For the most part, the care Robert received was, as he says, "excellent."  There were many, many caring nurses and other staff which was most appreciated during this stressful time.  These suggestions are meant to be just a little fine-tuning! 

What are your dos and don’ts for medical professionals? 

Counting My Blessings

A week ago Friday, Robert woke up with a temperature of 102, difficulty breathing and unable to sit up without assistance.  EMTs were called, Robert was taken to the emergency room and diagnosed with septic shock and pneumonia.

Robert is happy to be home from the hospital

The night before, he was slightly congested and had a temperature of 99 (which the hospital wouldn’t even classify as a fever) but, other than knowing how infections take hold of him quickly, there really was no indication he would be as bad off as he was.

It came on that suddenly – much like last May when he was also hospitalized with pneumonia and sepsis.  This time, he landed in the ICU, his fever spiked to 104 on night two and we were told he was “pretty sick.” 

After only one week, Robert was released and came home to enjoy both a Double Chocolate Chip Frappuccino from Starbucks as well as a scoop of Rocky Road Ice Cream after dinner.  (I know it isn’t the healthiest way to celebrate his homecoming but, hey, it makes him happy).

It was a long week of running between the hospital, work and home but there were lots of opportunities to be grateful.  

1.      I am grateful Robert now lives with us full-time.  This recent illness progressed from mild to severe so quickly, I don’t know if New Home would have been able to get Robert to the hospital timely. Because of their location, even if they did send him to the hospital, it would not be the one his GP and neurologist are affiliated with.  Having access to as much medical information about the patient as possible is extremely important, especially during a crisis like this.

2.   I am grateful for the emergency medical personnel! The fire department and EMT response to our 911 call was fast and efficient.  These guys are awesome!

3.    I am grateful for the flexibility given to me at work and for my employer providing paid sick days.  I was able to go into the office for a few hours each day then do some work at the hospital as well as handle questions or problems via email or phone.  It was a relief to know I have this flexibility, that I have supportive and caring partners (who frequently asked how Robert was doing) as well as not having to worry about not being paid for missing work. Not all working caregivers have such a luxury.

4.       I am grateful for my animals! It was a welcome stress reliever to come home at night and have two labs and my cat snuggle up with me at night.  They don’t leave me or my husband a lot of room on the bed but you can’t have everything!

5.       I am grateful Robert is such a good patient! He is polite and tells all the nurses, “God Bless You” when they leave the room.  (Last year in the hospital, all the nurses thought he was saying, “I’ll miss you.”).  Either way, they think he’s a sweetheart.  Just don’t interrupt him when he’s in the middle of finding a word in his word search book . . .

6.      I am so, so grateful for my family.  Other Brother and Oldest Daughter visited Robert (and me) which perked us both up.  My darling mother-in-law has a special bond with Robert and as soon as he made it to a regular room, she visited – with a gift and a card in hand.  Robert grinned from ear to ear with each new visitor. (It's amazing how helpful visits are in the healing process.)

7.       I am grateful for the caregiving community of caregiving.com.  What a supportive group!  I had people emailing and texting me during Robert’s hospitalization, many of whom were participating in the WAIT Buddy program (anyone can sign up and it’s free!).   

8.      I am grateful for my husband.  Richard was calm throughout Robert’s ordeal and was more than willing to be at the hospital while I was at work (a necessity since Robert wouldn’t be able to tell me if the doctor had come in or what they said).  Richard continued to work his own job (which, thankfully, is phone-based so he could take calls at the hospital) and he took care of the animals since I left very early in the morning and didn’t get home until much later than normal.  He made Robert laugh during every visit and he even put up with me when the stress and my weariness made me a little cranky (just a little).

9.       I am grateful to have Robert home from the hospital.  He still has terrible chest congestion but his vitals are good. At least he’s home and moving around which should help him continue to improve (home is a much better place to recuperate – hospitals are full of sick people!).  We’re keeping a close eye on him and continuing to check his vitals (yeah, just call me Nurse Trish) but he seems to be getting back to his old self.  He and Taz have to remember how to get along with each other (Taz is still in the “I want to be right in your face checking out everything you’re doing” phase and Robert is in the “leave my food and chocolate shakes alone” phase).  I'm sure they'll work it out. 

It’s been a while since I have shared what I am grateful for and Robert’s recent hospitalization gave me a wonderful opportunity to be reminded of what is important.

What are you grateful for today? 

Robert Update



How bad can it be? He's got his puzzle book and a shake!

The first thing I want to tell all of you is how much I appreciate the outpouring of support and concern from everyone.  (I've been posting quick updates on Robert's Facebook page www.facebook.com/robertssister if you'd like to follow and check in with us there too). 

Robert was admitted to the hospital on Friday. There was some debate about putting him in ICU or a regular room and he was kept in the ER for several hours until they eventually settled on a regular room with Telemetry monitoring.

His diagnosis: pneumonia in the right lung and Sepsis.

Google Sepsis and you'll know why this scared the crap out of me.

They started him on antibiotics (two different kinds) but yesterday and today his fever has ranged from "normal" to over 100 degrees. That may not seem like much but for Robert with his diminished cognitive reserves, it takes a huge toll. His blood pressure is low anyway but since Friday it has fluctuated from low to holy-crap low.

Today, they took more blood to run culture tests and also took another chest x-ray. I've been at the hospital all weekend in order to talk to the doctor when he does rounds in the morning and also through the shift changes so the nurses are able to meet me and I can reiterate certain details about Robert: give him his meds on time and he won't have an increase in seizures, he has seizures but doesn't convulse during them, he enjoys his food so it may take a couple of hours to finish his tray.

The important stuff.

He certainly seems better but not out of the woods yet. I am comforted by the fact that he's in a regular room and, when he's not sleeping (which he has been a LOT), he's joking around and working on his word search puzzle.

I have so many things to write about this whole ordeal including a difference of opinion with Other Brother about how necessary it is to stay at the hospital all day long since nurses go to school for a reason as well as a few beefs with New Home (shocker!) but will save those for another day when I'm not quite so tired.

Thank you all for your support and well wishes and thoughts and prayers. I've told Robert that he has a lot of people praying for him and thinking of him and hoping he gets better.

His response: a simple "thank you."

More later . . .