Organizing Robert’s Room: A Win for All of Us

It is hard to believe Robert has lived with us full-time for four years! The first couple of years he lived in our family room and used a downstairs half-bath – no tub; no shower. Boy was he clean, though! It’s amazing how clean a person can get just using a shower chair, a bowl, sink and a thousand towels.

I would never have believed we could do that for two years but it worked. Robert was happy living with us and Richard and I just had to be creative and flexible to make it work for us too.

We moved to a one story house almost two years ago which means Robert has his own room and – bonus! – a bathroom with a shower and tub. He is ecstatic having his own room and I cannot believe how much I appreciate a full bath!

I’ve realized how important it was to have the experience of the first two years, though. It really made Richard and I think about how to efficiently and safely care for Robert in a less than optimal situation. Having to give him sink baths every day for two years makes it easy for me to return to those when he is sick.

Robert’s mobility is one of the first things to go when he is sick. He can’t stand up straight, can barely move his legs forward and certainly can’t turn or step backwards (as is necessary to get into the tub chair). So when Robert is sick, as he has been quite often these past several months, we go back to the sink, shower chair, bucket and towels routine. Even if he can’t move well, he still needs to be cleaned up.

When we first moved to our new house, we organized Robert’s room with his input. Having a television was very important to Robert so Richard mounted one on the wall so Robert could easily see it when he was relaxing before he went to sleep at night. It took a while but we finally got Robert a hospital bed so we could keep his legs up to reduce his edema and keep his head up a bit to help with his breathing and coughing.

His room was filled with family photos as well as a couple of collage boards with his get well and birthday cards he has received through the years.

The oxygen machine was set up so it was easily accessible and the charts we keep for him were on a dresser holding some of his “back up” clothes. (The most used clothes hang in his closet.)

After a while, he collected more medical equipment. He needed a nebulizer so we added that to a corner of the room. He was frequently sick so we kept the humidifier in his room as well. Add a standing fan during the summer since his room tends to stay warm as well as a CD player and an iHome player for the music he likes to listen to when he falls asleep. Half the time, we keep his transport wheelchair in his bedroom so he can use that when he is sick (the larger one is too big to easily move from the narrow hallway and turn into the bathroom).

The room was getting a bit crowded!

Robert had pneumonia this past October and again in January. Thankfully, his medical team agrees it is best if we can keep him out of the hospital when he is this sick. There is such a decline after a hospital stay and if we can administer antibiotics and keep track of his vitals regularly at home (need to keen an eye out for Sepsis), then there is no reason to send him to the hospital.

Keeping him home when he is running a fever, coughing and barely mobile is a challenge but his doctors trust us enough to know we will send him to the hospital if he takes a terrible turn for the worse. (It helps to have the most caring Nurse Practitioner on the planet in daily contact – she even gave me her cell number in case I can’t reach her in the office.)

When Robert was sick in January I realized his room had to be reorganized. I was squeezing between his bed and the window in order to take his vitals and the oxygen machine tubing was unorganized and a mess. I was stressed out enough worried about Robert and being hyper-vigilant with his vitals and needed to make things a little easier on myself.

Once Robert recovered and was spending more time in other parts of the house instead of most of the time in his room, I went to work. I put the medical gloves on, grabbed the cleaning supplies and turned on some music.

I meant business.

I cleared out the unnecessary crap in his room. If he didn’t need it, it was gone. Does he need a CD tower with a hundred CDs? Nope. He listens to one or two. Does he need this extra table in the room? Nope. Gone. He does need better lighting so a standing lamp from my office was relocated to Robert’s room.

I reorganized the supplies in his closet, on his dressers and moved the oxygen machine. I hung hooks so I could organize and loop the pesky tubing on the wall to keep it off the floor. I moved the nebulizer, humidifier and blood pressure machine so they were easier for me to access when needed.

I made sure his personal touches were still visible (calendar, bible, photos and collages). We even went shopping when he was better and found a 49er blanket on sale!

Things were looking good.

When he got sick again in March, the room was put to the test! Thankfully, everything was in easy reach and I wasn’t doing gymnastics in order to use the nebulizer or refill the humidifier.

The room fulfilled two purposes: it was personalized to make Robert happy and it was organized to make things a little easier on me.

I’m sure there will be more changes to come depending on Robert’s health and the addition of even more equipment but I know Richard and I can make do with whatever is thrown at us and am confident we can make a few changes when needed to make all of us happy.

It’s important to me that Robert is comfortable and happy but equally important that things are set up in a way that Richard and I, the caregivers, are happy and comfortable too.

Everyone wins. Nothing wrong with that!  

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. 

What More Can I Do?

Robert has battled bronchitis three times since January. He was hospitalized three times last year for pneumonia. He has such constant congestion that even the Costco packages of tissues aren’t enough to last very long. When the congestion gets terrible and it turns into bronchitis or pneumonia, we resort to antibiotics.

Taz likes to help -
whether Robert likes it or not! 

I am trying to keep it under control so we don’t have to use them – goodness knows, he is already resistant to many of them and I don’t need to speed his resistance to the rest of them.

It is a balancing act but once he starts with a fever, continued congestion, slowness and drowsiness I know what is coming.  What I am trying to avoid (aside from over-use of antibiotics) is the bronchitis turning into pneumonia resulting in a hospital stay.

Call me self-serving but it’s a pain when Robert is in the hospital. He rapidly declines, not only from the pneumonia but from the actual stay in the hospital. It takes weeks – sometimes months – to get him back to baseline.  Sometimes there’s even a permanent shift in his skill level, balance and independence. 

Lying in bed for long periods of time make his legs weak and while the physical therapy usually prescribed helps, it feels like we are starting from scratch over and over and over. 

The antibiotics themselves wreak havoc on his digestive system which means he has bowel incontinence for months after a hospital stay.  We load him up on probiotic juices and yogurts but after all those strong antibiotics it is just a matter of time before he is able to have some control again.

Yeah, so call me selfish but I am not at all keen on letting his congestion turn into pneumonia.

Over the last several weeks we have been managing a new medication so it has been difficult to tell if some of the things going on with Robert are a result of the medication or if something worse is working on him. 

For weeks his congestion has been so awful at night that he throws up from it.  After the first accident I realized having a bowl bedside could help with the 2:00 a.m. clean-ups.  Sure, he still calls me after throwing up but there’s a much smaller mess to clean up.

I wrote to Robert’s primary doctor asking how else we could manage his congestion. The congestion just sits in his chest and it is impossible for him to cough on demand.  I explained to the doctor what we are doing so far:

Increasing his liquids to thin out the mucus;

Using a neti-pot to drain his sinuses;

Giving him Coricidan (a decongestant approved by his neurologist);

Daily doses of Musinex and AllegraD;

Nasal spray;

Wedges to prop up his head and for his feet; (he practically sleeps like a pretzel!);

Daily vitals check; (watching for a high pulse and low blood ox and low blood pressure);

Checking the color of the mucus when he does cough up stuff; (Not a fun job but I am very happy when I don’t see any yellow or green in his throw-up/spit up bowl. Although, imagine my initial panic when I saw brown but then remembered the Thin Mints I let him have an hour earlier.);

I even started giving him salsa and chips for a snack so it would make his nose run!

Richard and I also changed Robert’s bedtime routine so he is in bed earlier and, hopefully, sleeping more.

His doctor replied recommending we use a humidifier and an air purifier.  We use the humidifier; I just forgot to mention it.  As for the air purifier – I knew I recognized that thing in the corner gathering dust.  I completely forgot we had it and for some reason stopped using it.

Okay, it’s back on.

Congestion is the same.

Day Program had reported Robert having issues walking and with balance but I chalked it up to the new medication. 

I sent a similar message to his pulmonary doctor only by this time, his pulse was slightly elevated and his blood pressure was a little on the low side. 

What more can I do to manage his congestion?

Before getting a reply, it was the middle of the night Friday and Robert woke up at 2:00 a.m.  Taz and I went downstairs (Taz always goes with me when Robert wakes up in the middle of the night).  Robert thought he had to go to the bathroom.  I got him to the bathroom before realizing he felt warm but a fever didn’t register on the thermometer. 

I cleaned him up and gave him two Tylenol anyway.

By morning, Robert was extremely sleepy but that wasn’t too unusual for a Saturday. I let him sleep but took his vitals. Still no fever but when I lifted his arm to put on the blood pressure cuff, I noticed his back was soaked from sweat. He was more than just sleepy – he was having difficulty keeping his eyes open.

The report from Day Program about him having trouble walking was looking more and more like the onset of his bronchitis/pneumonia.

Oh crap.

I gave him two more Tylenol, finished with the vitals and called the after-hours number for the primary doctor.  I was not going to the hospital if I could help it!

The PCP was very nice but she was being overly cautious and wouldn’t prescribe antibiotics without him being seen.  She advised me to take him to the ER.

Ugh.  I don’t want to hurt your feelings but I think I am going to call his pulmonary doctor to see what he says.  She audibly sighed which sounded to me like relief. Yes, good idea. Call the pulmonary doctor, she said.

So I did.

I explained to the pulmonary doctor on call what was going on; Robert’s history of pneumonia and bronchitis and hospitalizations. I gave her a run-down of his vitals.

She prescribed antibiotics.

She told me if his blood pressure got below 80 or 90 (the systolic number), to take him to the hospital. 

I started him on the Z-Pak (a very strong, five day dose of antibiotics). Robert slept all day long and I only woke him to check his meds every hour and to give him his medications.

I told Richard I wished had an IV pole to hang a bag of antibiotics.

Robert’s blood pressure went down to 93/65 – oh boy, that was close. I think I willed his blood pressure to rise right about then.

At 5:00 p.m., I made him get up to go to the bathroom so I could check his sheets and change him if needed. At first he thought it was New Year’s.  Then asked if it was Christmas.

Nope, just Saturday.  He didn’t seem too disappointed.

He also thought it was morning but I let that go. It probably didn’t help that I gave him scrambled eggs and hash browns for something to eat. 

Thankfully, the antibiotics did the trick. He still had a nasty cough but seemed more alert and his vitals were getting better. He has slept through the night the last few nights but his vitals were starting to creep toward the “getting sick” side again today. 

My fingers are crossed but they are ready to dial the pulmonary doctor again for advice or 911 if a hospital visit and stronger antibiotics are needed. 

I wonder how quickly I can learn how to work an IV?

Finding the Sweet Spot

I’m not much of a baseball person. 

Okay, okay, I will wait while the gasps die down out here in SF Giants territory. 

Oh sure, when Giants fever was consuming my office I was a fan. I mean who couldn’t fall in love with Timmy Lincecum, Pablo Sandoval, Brian “The Beard” Wilson or Buster Posey (my personal favorite)?

Of course I loved going to the softball games of my niece (who is a die-hard Yankees fan, despite living in the Bay Area).  Attending my step-son’s baseball games while Richard coached was great fun for me and the girls because we would pull up a few chairs, grab some giant salted pretzels (or a hot dog for one daughter) from the snack shack and then somehow maneuver mustard onto the pretzel and relish onto the dog while sitting in the blazing sun.

Just getting situated with the food was enough to eat up a few innings.

Growing up, Mom and I would take Robert (he was called “Robbie” then) to Other Brother’s baseball games.  Mom and I would sit in the car while we let Robbie run wild. Oh, and he did. During one game, he got stuck in a mud puddle.  Yep – he even lost his shoes because he couldn’t get out.  The thought crossed my mind that he might not make it out. 

I’m pretty sure the game continued while the mud drama unfolded.

Mom and I would joke about Other Brother standing in the outfield with his gloved hand on his hip, elbow sticking out and knees bent with a hat tipped down to block the sun and a serious look crossing his face.  He looks like a teapot, Mom would say.

Mom and I loved watching "our teapot" and I have loved watching my niece and step-son play the sport. So while I am not much of a baseball person I certainly love and support those who do.

I asked Other Brother once we were grown and entrenched in our careers and families what his dream job would have been.

“Professional baseball player,” was his quick reply.

The image of his teapot stance in the outfield of Candlestick Park delighted me.

Years later I find myself using a baseball term: finding the sweet spot.  That’s where I am right now – trying to find the sweet spot with Robert’s new medication and keeping his congestion under control.

(Full disclosure: I’ve been thinking about this term and how elusive it seems to be but had to look it up to figure out exactly what it meant. I thought it was the strike zone but, apparently, it’s the part of the bat that helps the ball go the furthest. I’m sure my baseball-loving readers will correct me if that’s not correct).

It felt like Sunday we had hit the sweet spot.

Robert had been on a very, very low dose of his new medication (Trileptal) for a few weeks and the moodiness, balance issues and drowsiness had worn off.  The effectiveness of the medication had started to wear off, too, so the seizures were returning. We slightly increased his Trileptal which stopped the seizures cold but hadn’t yet affected his mood or balance. By Sunday night it dawned on me that he had gone all weekend without a seizure.

All weekend!!

I couldn’t believe it so checked the log and there weren’t any entries since Friday morning.  Could this medication really be the answer?  If we could just keep the side-effects at bay. . .

Robert slept in very late on Sunday, woke up in a great mood, was joking around and declaring every meal “delicious.” His congestion was still pretty bad but he hadn’t had a seizure in two days and he seemed really happy!  Robert even proudly declared that he hadn’t had a seizure in a long time.  

We hit the sweet spot! (Or as close to it as we can get.)

It didn’t actually last very long – Robert’s seizures returned (although not with the vengeance he’s had the past few months).  With the increase in medication, it took just a few days for there to be an increase in his irritability, unsteadiness and drowsiness.  The congestion has been keeping him up with coughing and throwing up (which doesn’t help his sleepiness and grouchy mood).

I suppose that’s what happens in baseball too. Home runs don’t happen with every “at bat” but remembering the time you hit the ball just right on that sweet spot is enough to keep you coming back to the plate, hitting and trying and practicing time and time again.

That’s what we’re doing: we keep trying.  We keep working; we keep practicing.

We keep trying to find that sweet spot again.

Leave Room for a Little Sunshine

Rock, meet Hard Place but leave some room for a little bit of sunshine.

Robert’s nighttime cough was worse by Friday even though he was on cough medicine. He was not sleeping well. The coughing and congestion was so severe he threw up a few times in the middle of the night. 

Photo Credit: Matt Stevens, "Flow"

(He made it into the bucket about half the time and since I’m a glass half-full kind of gal, I consider that a win.) 

Every day I take Robert’s vitals: blood pressure, blood ox level, pulse and temperature.  Everything was in his normal range and by Friday he still hadn’t run a fever.  Great news but what I saw was the cough getting worse and the weekend upon us.  Is that a train up ahead?  It feels like Robert is on the tracks and I’m racing to rescue him before the pneumonia train runs him over. 

His cough has been subsiding during the day so he seemed well enough to go to Program. I sent him on Friday but explained I was going to call his doctor to get an appointment.

A few minutes later: “You’re going to pick me up at 1:30?”

Um, no.  It’s only 7:30 a.m. now and the doctor’s office isn’t open yet.  I have to call for an appointment.  Just go to Program and once I have the appointment, I will have the staff at Program let you know when I will be there.

“Thank you.”  He went back to looking out the window for the bus. 

I called the doctor’s office the previous week, too, but spoke to the advice nurse. I explained what was going on: cough, no fever, no other sign of infection.  “Bring him in” advised the nurse and doctor.

Well, no.  I knew I would take him in and they wouldn’t be able to do anything because it isn’t a full-blown infection.  The only thing that would come of it would be me feeling guilty for missing more work.  So I made the decision a week ago to not take him in.

The coughing got worse through the next week and I thought I saw just a tinge of yellow in the mucus. The cough was disrupting Robert’s sleep more and more. The vomiting started.

Robert went to Day Program and this time I called the doctor’s office for an appointment. I was still torn – still no fever, not sure what they could do but I needed guidance.  I needed a doctor to help me out since I was struggling with how to keep Robert healthy. I was wishing my brain would have been able to comprehend science because I would like to be a doctor right about now.

We had a late morning appointment so I picked up Robert from Day Program after handling some morning emails from work.

Not surprisingly, Robert’s vitals are fine at the doctor’s office. We are escorted into the office by a young woman who is always very sweet to Robert.  She calls him “Mr. Wright” and gets no argument from him about “I prefer to be called Robert.”  It sounds very official and important so I understand why Robert doesn’t mind.

Maybe I’ll start calling him that when he is in a cranky mood. 

Robert promptly falls asleep in a chair and the doctor soon walks in.  He looks at me and at Robert (he is the one who diagnosed bronchitis in February). He is clearly wondering why we’re back.

I explained my dilemma: Robert’s congestion is worsening and he’s throwing up at night from it yet his vitals are fine.  I do not want to over-use antibiotics since Robert is already resistant to some.  We need to hold those in our arsenal. 

“Doctor, I’m struggling with this.”

We discussed the pulmonary doctor visit, discussed the situation and he listened to Robert’s lungs. He went back to the computer and read over more notes and looked at a loss.

It was strangely comforting to know the doctor was struggling with what to do as much as I was. 

We are both in agreement that we don’t want Robert on antibiotics prematurely. He was concerned about us going into the weekend, though. He decided to order antibiotics for me to have on hand but to only give to Robert if he started to show signs of an infection.  He then punted to the lung doctor.

“Call him today to see what he recommends.”

We finished up; I thanked the doctor for his help and shook his hand.  He is someone who really does care and strikes me as someone who gets frustrated when he can’t find the answer or come up with a good solution.  As far as I was concerned, this was the best solution available.

At least until my magic wand gets out of the shop.

Robert and I went home and I got him settled with his lunch. Richard took over for the afternoon while I went in to work for a few hours. 

I called the pulmonary doctor and left a message for his advice nurse.  I explained the situation and the “just in case” antibiotics.  The advice nurse called me back after talking to the pulmonary doctor and said he recommends giving Robert the antibiotics.  Don’t wait for the fever.

As much as I struggle with keeping antibiotics in our back pocket in order to prolong Robert’s resistance to them as long as possible, it was a relief to be able to give them. Waiting for the fever is risky – once that happens it is a short trip to pneumonia and sepsis.

Robert has been on the antibiotics for a day and a half.  He coughed last night but didn’t throw up. We let him sleep until noon yesterday; waking him only for his medications (Taz gets extra credit for letting him sleep!). We are letting him sleep late again today.  He has a lot of sleep to catch up on after all that coughing the past few weeks.

It’s been a beautiful weekend of sunshine and Robert seems to be on the mend.  I am not going to think about whether or not this latest round of antibiotics will contribute to him being resistant in the future.  I can’t worry about the future.

These are difficult decisions but, for now, the train has slowed down. Heck, if I am being really optimistic, I will even say Mr. Wright is off the tracks.

I can even see a glimmer of sunshine through that rock and hard place. 

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.