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!

Processing Pulmonary Health

Robert has been healthy – I mean, as healthy as he’s been in a long time and as healthy as someone who sees two Neurologists (an Epileptologist for his epilepsy and a neurologist specializing in movement disorders), an Otolaryngologist (his swallow doctor) and a Pulmonologist (his lung doctor) can be.

Taking advantage of a good run of good health:
Enjoying being on a River Cruise!

(You’re still knocking on wood, right?).

Robert’s health is definitely a house of cards but we have been very fortunate of late and I am extremely grateful. I am also a little wary because I know this can’t last forever but I try not to worry about the future. Not too much, anyway.

We usually see Robert’s pulmonologist two or three times a year. A couple of appointments ago, he was chosen to be in a research study for bronchiectasis. Robert is always up to help others and it only involves giving blood every few months which he is happy to do. He is not easy to get blood from but it doesn’t hurt him so he signed up.

I have been very happy with his pulmonary team over the last few years. His doctors have changed since Robert is seen at the local teaching hospital but they have all been very earnest, kind and good to Robert. The staff, particularly the nurse practitioner Lana, has been the mainstay of the practice and we absolutely adore her. She single-handedly helped Richard and I keep Robert out of the hospital a year and a half ago when he had pneumonia. We treated him at home and I talked to Lana several times a day, giving her Robert’s vitals, reporting on his mucus color (that’s always a fun job), and talking through his symptoms.

Lana was a lifesaver. She got us a nebulizer, gave us tips on how to clear the mucus, got the script for the antibiotics ordered and checked on us constantly. Without her, Robert would have been hospitalized which always results in a decline and an extra-long recovery time.

Lana also has epilepsy which she developed as an adult so she was definitely meant to be a part of Robert’s care team. (An interview with Lana will be featured in the Robert’s Sister interviews for Epilepsy Awareness Month in November!)

At Robert’s last appointment he saw his regular doctor and then had a new supervising doctor see him after the initial appointment. The first doctor and I talked about Robert’s increased coughing episodes and his choking and vomiting episodes that happen occasionally at night.  I was also concerned about winter coming (yes, I sound like Jon Snow from Game of Thrones) so the doctor suggested we come back in three months just to be sure everything was staying stable.

When the supervising doctor came in, he asked what I am doing to keep Robert from aspirating. Robert’s pneumonias stem from aspirations, usually during seizures. I listed everything we do: regular use of the Acapella, inhaler when needed, on three different kinds of meds to control his congestion and  following the swallow doctor’s orders of small bites with meals and taking only two meds at a time (instead of a handful as Robert thinks he can). I neglected to mention that I also brush his teeth regularly, use the brushes to get between teeth (flossing his teeth is too difficult for me) and take him to get his teeth cleaned four times a year.

I am absolutely convinced the reason Robert’s pneumonia episodes have decreased is because of the attention to his oral health. It is really amazing!

I told the doctor that, frankly, there was nothing I could do to prevent Robert from aspirating as it usually occurs during his seizures. I explained we are working with his neurologist in order to get seizure control but it just is not happening right now.

The doctor looked at me and said, well, let’s see Robert in a year.

Um, what?! Was it something I said?

What happened to every three to six months? What if he gets sick? What happened to my lifeline?

I admit I was a little panic-stricken.

I felt like we were getting kicked out for some reason. Did I answer your question incorrectly? Am I not doing enough for his pulmonary health? I don’t know what else I can do!

There’s something about the thought of losing a lifeline that can create absolute havoc for me. I like lifelines and safety nets and back up plans. Multiples of all of them if possible.

As we left, the doctor said we could always call if there is an issue. I thought he was just trying to make me feel better.

Hmmpf. I left feeling I was alone in dealing with any future coughing, choking, pneumonia or any other pulmonary issues.

I realize I was being a bit over-dramatic, which thankfully, was happening just inside my head.

I emailed Lana and told her I was a little concerned about Robert not being seen for a year. She reassured me that the doctor meant well and actually, I should “take that as him wanting to take pressure off you.”

Wow. A doctor who is concerned about me, the caregiver? That hadn’t occurred to me.

He did say I could call if there was a problem. Lana said the same thing.

I realized I still have my lifeline. Not only that but I have fewer times in a year that I have to rearrange my work schedule and Robert’s Day Program schedule.

I can definitely see the upside to this idea!

It has been a few weeks since the appointment and nothing dire has happened. (Humor me: knock on wood.)  I have Lana’s email, I have the online messaging service for all of Robert’s doctors and I know their phone number if things start to go south.

Winter is still coming but I feel like I have my lifeline again.

Robert Update: Define “Decline”

Robert had a follow up visit with a stand-in GP the other day.  This was to give us the results of the pulmonary testing Robert had done not too long ago which had been ordered because he’s been hospitalized twice in the last 11 months for pneumonia.

His regular doctor is terrific and she wants to get to the bottom of his seeming susceptibility to pneumonia.

I was hesitant to see the new GP only because you never know what you might get with a new doctor.  This new doctor was filling in for Robert’s wonderful regular doctor – who is now on medical leave herself!  

Yep, even doctors get sick.  In fact, the last time Robert saw her (when she gave us the referral for the pulmonary testing), we were swapping emergency room stories.  She had recently been in the ER and even she – A DOCTOR – had trouble getting the staff to listen to her.  She said the ER is so chaotic that the staff just wants you to “sit in a corner and be quiet.”  (The doctor actually said that!)

I love Robert’s GP – she gets it. She’s awesome with Robert, personally called me when he was in the hospital and one time even gave me a tip for an online shoe store – now that’s a doctor I can love!

I would have preferred to see her for Robert’s follow up but she is out for another month and I really want to get to the bottom of Robert’s coughing and congestion issues.

We lucked out – the replacement GP was another fantastic doctor.  He listened to my theory about acid reflux and GERD possibly being related to Robert’s coughing and lung issues, he told me what he was thinking about what might be wrong and how we can figure it out for sure and he was extremely kind to Robert. 

He even laughed at Robert’s jokes!

I have to say how grateful I am to have such a supportive medical team for Robert. Robert’s medical expenses are covered through Medicare and Medi-Cal (the California program for Medicaid) and one might expect a reduced level of care because he doesn’t have top-notch private insurance.

Nothing could be further from the truth for him.

We are very fortunate.

The new GP agreed with the acid reflux/GERD theory and added a medication to Robert’s growing list of daily pills (Robert is doing his part to keep the pharmacy in business!). The doctor also gave us a referral to a GI specialist and thought they may want to do a colonoscopy and an endoscopy – scopes on both ends of the GI tract. 

I’m assuming not at the same time. . .

The doctor backed off of the pulmonary specialist referral but decided to do a six minute walking test, just to be sure. 

Well, that didn’t last long because Robert’s blood oxygen level dipped to 84 in less than 60 seconds of walking (it should always be over 90 at the minimum). (Not really surprising to me since I know he starts to breath heavily when we are walking at the mall or going to Target.)

The doctor decided Robert needed the pulmonary referral after all as well as oxygen whenever he is “active” – definitely a relative term since I wouldn’t really use “active” to describe Robert.

In a span of 30 minutes (that’s counting the bathroom break Robert needed), we got a referral to a GI with the possibility of at least two tests coming up, a referral to a pulmonary specialist (with more tests to do, no doubt), an order for oxygen and new medication. Oh yeah, and more blood work to check for a nasty stomach bacteria, vitamin deficiencies and a host of other possible issues. 

On top of this, I realized I had made a mistake with Robert’s medications!  Yikes! For some reason, I recently added an additional Zonegran to his regimen in the morning. The only explanation I can come up with is his neurologist added a third one in the morning last fall and then a fourth one in the evening after Robert’s recent seven minute seizure and I got it in my head that he needed four both in the morning and the evening.

Ugh! I was sick to my stomach when I realized I – the keeper of the medications and holder of high expectations of myself – made a medication mistake.

While I’m still kicking myself for it, I need to move on.

On the plus side, since Robert was taking 27 pills per day (with my error), the extra prescription doesn’t really add anything to his daily count – correcting my error and adding the new prescription is a wash as far as the number of pills per day. 

(That’s called New Math . . .)

With more doctors added to Robert’s medical team, an order for oxygen and a new prescription, does this mean a decline for Robert?

I have noticed he has increased short-term memory problems, his right leg drags more and his coughing fits have increased and been more intense (often times causing him to vomit). Robert’s incontinence seems to be getting worse (he sometimes doesn’t realize when he’s going to the bathroom, even when he’s on the toilet which is new).

Recently, I asked Other Brother if he noticed a decline. Other Brother doesn’t see Robert as often as I do so thought he would be a good judge of seeing any real change.

He told me he thought Robert seemed about the same. “Perhaps a bit slower with the walker” but “pretty alert.”

I couldn’t understand how Other Brother couldn’t see what seems to me to be an obvious decline but then it hit me.  The last time Other Brother saw Robert before we visited him recently, was when Robert was in the ICU hooked to IV lines. 

No wonder!  Heck, compared to that, Robert is on the upswing!

What I realized in my quest to define and see “decline” is that it is important to me because I am trying to predict the future. If there is a decline, will Robert be hospitalized again soon because of pneumonia? Will he eventually need a wheelchair because he can’t walk around without falling or trouble breathing? Will we need to change the type of protective briefs he wears because of the accidents? How much longer does Robert really have? How long can we care for Robert at home if his needs increase so quickly? 

Yes, I sometimes wish I were psychic instead of neurotic.

Since I am not, I will take a cue from Robert and live in the moment. (Of course, he’s been reliving moments lately telling us “Good Morning” several times and each time as if it’s the first time he’s seen us.) 

No matter - defining decline can’t be my focus.  Keeping Robert as healthy as possible (even if it means several new appointments) is what is important. Keeping Robert’s medications straight is what is important. Arranging as much help as possible so Robert can continue to live with us is important.

Oh yeah, and visiting that online shoe store is important. . .

Phew! At least I have my priorities straight.