When the Miracles Run Out

        Our family has been blessed with miracles for many years.

        Just looking at Robert’s run, he had a seizure while swimming when he was 16 years old and somehow survived after being in a coma for three days. He survived terrible falls (including one onto a lamp which burned his arm while he seized for god knows how long), concussions, an infection in the Deep Brain Stimulator when he was in a trial for it at UCSF, countless seizures and seizure clusters, two rounds of COVID pneumonia, a ridiculous amount of aspiration pneumonia, and, as recently as June, a severe case of pancreatitis brought on by gallstones.

Along with being the Bingo King he was the Comeback Kid.

Always pulling out a miracle.

When Richard had his own miracle of surviving a “widow maker” cardiac arrest, I started to feel a little guilty about our abundance of miracles. (Of course, if you know me, this comes as a surprise to absolutely no one.) I definitely got the guilt gene.

I loved the miracles though and was so grateful for each and every one. Logically, I knew that one day the miracles would run out. Robert has been so sick that doctors would pull me aside and solemnly tell me “I’m a little worried about him.” I told them that he always pulls through. I would worry too but would also allow myself to remember the miracles.

Robert always had one up his sleeve!

This last week, Robert seemed like himself. We went to his neurology appointment and his doctor and I talked about how amazing it was that the facility only reported one seizure last month! Yes, they could have missed some but they certainly weren’t missing 40+ a month like he was having when he lived with us just two years ago. Dr. Kennedy has worked with Robert for years, carefully adjusting his medications to see what might help without causing terrible side effects. He and I talked about how the Deep Brain Stimulator was helping along with the new medication Robert was on. Dr. Kennedy was even able to successfully slightly reduce some of the medications over the last several months, especially the ones that caused Robert’s ammonia level to skyrocket and make him sleepy.

Dr. Kennedy said eventually Robert could be moved from appointments every three months to six months! It was a great visit and it was not lost on me that this was Robert, again, being granted a miracle. The goal of zero seizures was no longer an impossible dream! It was within sight!

On Thursday, Robert enjoyed playing the card game of Kings in the Corner (his favorite). Pattae, his wonderful caregiver, shared that he won multiple times which was actually pretty typical.

Friday morning, though, I got a call that he was being sent to the Emergency Room. I was completely confused because I had seen him a couple times already that week and he was fine. Didn’t seem to be sick at all. I can usually tell when something is working on him but there was nothing.

    He was sent to the hospital unresponsive and by the time I got to the hospital, he was intubated and they were working to stabilize his blood pressure. They checked for a stroke, they checked to see if he was in status epilepticus, they ran so much bloodwork they ran out of good veins in his arms and had to use his leg.

    Robert quickly landed in the ICU, ended up with four “pressors” to get his blood pressure up and started with one broad spectrum antibiotic but ended up with four!

    He got so sick so quick. He was in septic shock.

    They finally figured out he again had pancreatitis. This time, it was “necrotizing pancreatitis” which in normal person’s lingo is “no bueno.”

    I followed along in his chart with the lab results and consulted Dr. Google or Chat GTP when I had a question. I looked up one of his liver enzymes which was in the thousands and was met with “you must have a typo.”

    Family and friends came up to see him, pray with him and say their goodbyes, just in case.

    Both nights he was in the ICU I was called to come to the hospital since things were not looking good. The second night, the doctor told me that he was not responding to the medications and his belly was swelling (surgery had been consulted and that was not an option because of how sick he was) and his organs were failing.

    Robert had remained mostly unresponsive the entire time and this was without sedatives. His body was just too tired to engage. I got one or two hand squeezes but not much more than that.

    We had to make the awful decision to remove his breathing tube.

    There was not going to be a miracle this time. Robert was not going to recover.

    I asked for the hospital pastor to pray with him before we did anything. I’m not really religious but Robert is and I wanted him to know he was going to heaven to see our parents and step-dad and Richard’s mom.

    Robert died quickly and peacefully with Richard and I by his side, holding his hands.

    I have spent today notifying service coordinators, his Day Program, the transportation company we use and others and gathering his belongings from his facility and seeing Pattae. With every phone call and text and every visit with the staff at the facility, we were met with tears and the same comments: We are heartbroken. Robert was special. Robert won over cranky residents. Robert will be deeply missed. Everyone loved Robert. Robert spread joy wherever he was.

    After hearing the same comments over and over, I realized Robert had one more miracle after all and that is all the hearts and souls he touched while he was here.

    Miss you, little brother.

 

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!

TMT: Too Much Time (Together)

Richard and his mom coined the term, “TMT.”

Since Richard is his mom’s primary caregiver, they spend a great deal of time together going to doctor appointments which are usually an hour away or during her hospitalizations for surgery or heart-related issues.  All this time together can get on their nerves and they both know when they are at their limit.  When that point comes, they look at each other and one of them will say, “TMT.” 

"My watch is excellent."

Too much time -- together. 

This simple phrase signals a time-out for both of them whether they are in the car or at the hospital or doctor appointments.  After their brief cooling off period, they are back to their usual joking, laughing and sharing ways. 

This weekend I called “TMT” with Robert.  A week-long hospital stay, much of it in ICU, stressed us both out and it showed the day after he came home from the hospital. 

We arrived home Friday before lunch and had a relaxing day.  Robert was pretty ripe from lying in a hospital bed without a bath for a week, so I got him cleaned up and dressed in some comfortable clothes.  At the doctor’s suggestion, we continued taking vitals and encouraging Robert to cough.

“Encouraging” could easily be interpreted as “nagging.” 

I’m pretty good at nagging (just ask anyone I work with or who I am married to).

It didn't help that his motor and personal care skills took a nosedive (but are getting better and closer to baseline each day).  It also didn't help that he and Taz had to get reacquainted with one another.

Do you need help changing, Robert?  Let me get you cleaned up, Robert. Taz is just being friendly, Robert.  Cough, Robert.  Get the congestion out.  Blow your nose, Robert.  You’re going to end up back in the hospital if you don’t, Robert.  How do you feel, Robert?

Sheesh, I was getting sick of hearing myself.  Plus, his balance was off so I was literally hovering to make sure I was nearby in case he fell.  By Saturday, Robert was sick of my hovering and my questions nagging and yelled at me, “I feel excellent whether you like it or not.” 

“I feel excellent.”  This was Robert’s answer throughout his hospital stay.  Never mind the pneumonia, hypoxia and septic shock.  Robert was convinced he felt excellent.  I love his positive attitude but being a terrible self-reporter is not helping his health any.  (Another good reason the doctors and nurses need to listen to caregivers). 

I continued to take vitals but I backed off on the questions.  Contributing to the stress, I had to take Robert’s watch away in the hospital because it was apparent it was way too tight.  It was an inexpensive watch with an expandable band but it couldn’t be adjusted to be any larger.  Robert was very irritated that I wouldn’t give him his watch and repeatedly asked when we could get a new one.  I promised to take him on Saturday if he was feeling up to it.

“I feel excellent.”  Of course he does.

I packed up the wheelchair since Robert was still trying to get his strength back and off we went to JC Penney where I knew he could sit and try on watches.  I repeatedly told him he would have to get one that fit better than the last one.  He was convinced it would fit perfectly.  I explained a perfect fit to him might actually be too tight.  I told him it had to be a little bit loose.  He gave me “the stare” which is what he does when I’m starting to get on his nerves and repeated his belief the new watch would fit perfectly.   

My crankiness was increasing and all I could do was hope we would be able to find a watch that would be tight enough to satisfy Robert without cutting off his circulation to satisfy me.

My afternoon was definitely not excellent. 

We got to Penney’s and looked at the watches.  Robert wanted a gold watch – a “14 karat gold” watch.  I don’t know why but that’s always what he wants.  I just looked for the gold color watches and told him it was 14 karat gold (yes, I lied.  Sorry but I was at the end of my ability to negotiate). 

The nice sales clerk showed us a watch with an expandable band that could be made smaller if needed.  Robert tried it on and it fit perfectly.  I couldn’t believe my eyes – it was slightly loose to satisfy me but tight enough that it didn’t move around a lot to satisfy Robert. 

How do you like the watch, Robert?

“It is excellent.”

Relief! The sales clerk cut off the tag, set the date and time and handed it to Robert to wear immediately. 

I took a minute to buy a couple of things for me and then wheeled Robert over to get him a few more casual sweat pants that he can wear while he continues to recover.  He laughed and joked and was generally in a much better mood. 

Once we were home, there were a few more instances of us getting on each other’s nerves but nothing some good sleep, getting back to baseline and a TMT time-out or two won't cure. 

Things really are starting to look a little more excellent.