Tuesday, April 22, 2014

The Magic of Excellent

I might be looking at this all wrong.
It doesn't get more excellent than this

Robert can be lying in the emergency room with, at times, four people trying to find a vein and when asked how he is feeling his reply is always the same: “I feel excellent.”

The doctor or nurse asking the question will glance at me and I will explain, in a wringing-of-hands kind of way, that “Robert is a terrible self-reporter.”

Robert has had a lot of dental work lately - new crowns put in as well as a few fillings. When the dentist asks him how the new handiwork feels so he can make any adjustments, Robert replies, “It feels excellent.”

Shaking my head, I explain that “Robert is a terrible self-reporter.”

I feel for the dentist who has to guess if Robert’s new crown is comfortable and for the doctor who is working to figure out Robert’s source of infection and high fever. I struggle with how to decipher how Robert is really feeling. Sure, he says he is excellent but what is he really feeling?

Well what if I am looking at this all wrong?

What if Robert really is feeling excellent? 

Maybe he isn’t a terrible self-reporter at all but has an incredible knack for feeling pretty excellent under just about every circumstance. 

Oh my gosh! What if Robert really does feel excellent?! 

As crazy as this sounds, this idea never occurred to me before.  I dismiss his self-proclamation of excellence in the face of “facts.”

Of course he doesn’t feel excellent – he has pneumonia (or bronchitis or is on a new medication).

Of course his crown doesn’t feel excellent on the first try – that’s impossible.

How could he feel so excellent?  It just doesn’t make sense.

This realization, this possibility that Robert really does feel excellent when he says he does, makes me see caring for him in a whole new light.  Robert is not easily rattled.  Sure, his medication makes him cranky and irritable and the puppy gets on his nerves but he still will tell me he feels excellent. Who is to say he doesn’t?

Why should I believe anything different?

Maybe if Robert really and truly feels excellent then I can lighten up a little bit.  Maybe I don’t have to work myself into a frenzy to guarantee Robert’s happiness. 

Maybe I can let go and trust that he’s got that covered. 

Maybe I can believe in the magic of excellent too. 

Sunday, April 20, 2014

This Thing Called Hope

We are now done with Week 2 of Take 2 of the new medication.  We were this close to not making it through Week 1 but we all pushed through and decided to give this new medication more time.
Getting a nice card in the mail helped get us through Week 1! 

Richard and I were more prepared this time going into the new medication at the lower dose than we used before.  We knew what to watch for: excessive sleepiness, trouble walking and extreme irritability.  I was hoping Robert could tolerate the lower dose without those side-effects and I was also hopeful we would see a reduction in seizures like we did at the stronger dose.

I am nothing if not hopeful.

I wanted to wait to start the lower dose of the new medication until Robert’s cough subsided but his cough is fairly constant and just not going away. I finally started the medication at the end of a day in which Robert had five seizures (one being four minutes long).  It would have been nice to have Robert feeling one hundred percent so I could be certain any behavior or mobility changes were due to the new medication but the excessive seizures were the tipping point for me and I decided we couldn’t wait any longer.

Week 1 was difficult.  Robert was so tired, most days he couldn’t even manage dressing himself.  He was having difficulty walking and had screamed at his afternoon driver that he was lying about a story the driver was telling Richard. Robert was sometimes slurring his words and got so mad at me he threatened to call the police and have me arrested.

He also still had his nighttime cough and threw up a few times during these coughing fits.

It was not a fun week.   

Why would I even consider continuing the medication into Week 2 after that difficult first week?  Because we saw a decrease in his seizures.  The seizures didn’t stop completely like they did on the higher dose but they definitely decreased.  I was hopeful his body would adjust to the medications and that eventually he wouldn’t have the mobility and behavioral side-effects and we could continue to see a reduction in the seizures.

I even hoped once he adjusted we could increase the medication to the point of it stopping his seizures without further side-effects. Could this be the final piece to the intricate puzzle of his medications to stop his seizures?

Hope keeps me going but I find myself tempering it with logic and reality; spreadsheets and logs. Sometimes I wonder if I can ever allow myself to experience unencumbered hope.

The jury is still out on Week 2.  He continues to have trouble walking.  His right foot drags so much, he even has difficulty making it move at all – sometimes it seems “stuck” and he just can’t get it to move forward.  He is still irritable but that seems to be lessening – he hasn’t threatened to have me arrested but he did get so angry at Richard that he predicted a not-so-pleasant-yet-extremely warm place where Richard was going to end up.  

His seizures are still fewer than they were before using this medication.  He went a couple of days without any seizures and then has had one short one each day.  There haven’t been any cluster seizures for ten days and for that, I am extremely grateful.  Before this medication he was having cluster seizures several times a week.

As of yesterday, I thought he was getting used to the medication. He was alert, less irritable and back to his joking-around self. Today, he has slept most of the day (and that includes dozing while eating Easter Brunch) but that could be because he has become accustomed to sleeping until noon on the weekends or because the coughing at night is interrupting his sleep. 

The neurologist’s plan calls for increasing the dose after two weeks.  I’m not prepared to do that just yet.  I talked it over with Richard and we agree that keeping Robert on the same dose for another week is the best idea.  The seizures have decreased and the mobility and behavior issues might be turning a corner.  I don’t want to increase the dose just yet but I am not ready to give up on it either. 

I asked Robert (the worst self-reporter in the history of self-reporting) how he was feeling on the medication and no one will be surprised by his response:

“I feel excellent.” 

Going into Week 3, Robert feels excellent and I feel cautiously hopeful about the medication yet concerned about the continued cough and mobility issues. 

I will continue to use the seizure, vitals and behavior logs to logically determine if Robert should continue on this medication or if, perhaps, he has another bout of bronchitis or pneumonia working on him.

The logs make me feel a bit more in control of a very fluid and quite unpredictable situation, but hope lets me believe in the magic of excellent.

Bring on Week 3! 

Wednesday, April 9, 2014

New Medication – Take Two

The decision to take Robert off of Trileptal (Oxcarbazepine) was very difficult.  It felt as if I was saying, “Why no, Robert, you can NOT have seizure control.” 

Robert has tried his entire life to achieve seizure control.  Our parents did what they could in order to reach that goal when he was a child.  When Robert lived on his own, he signed up for any and all drug trials possible (by this time, against our dad’s wishes).  He volunteered to be in a study for the Vagas Nerve Stimulator and the Deep Brain Stimulator. 

The Deep Brain Stimulator did seem to work for him (and we found out later he was in the group that had the device “on”) but he developed a life-threatening infection and they had to remove it through emergency surgery.

When I took over Robert’s care, I heard him pray at dinner for God to allow him to not have seizures any more.

Then I heard him pray this again and again and again. 

Every day Robert has seizures.  Many times, multiple seizures a day and the seizures have increased in frequency over the last several months.  Robert does not usually realize when he has had a seizure (although he sometimes does and tells me he was able to fight it off.).  I found out pretty quickly that he gets agitated when I tell him he had a seizure.  He would argue that he didn’t have one. 

“I know for a fact I didn’t have a seizure” was the phrase I heard before realizing how much it was upsetting him to know he continued to have seizures. 

I don’t tell him anymore but I keep a detailed log of the seizures.  The only awkward part of this “don’t ask, don’t tell” policy is when we are in the neurologist’s office and Robert is asked how he is doing.  Robert replies, “I haven’t had any seizures” and I have to discreetly hand the several page log to the doctor. 

Robert then will usually fall asleep and the neurologist and I can discuss any possible treatments for his worsening seizures without upsetting Robert.

One of these treatments was Trileptal.  For the starting dose, it was 300 mg twice a day.

Robert had 100% seizure control for several days in a row. 

I would have been jumping for joy if he also wasn’t practically comatose – sleeping constantly, difficulty walking and being extremely irritable and angry when he was awake.

So no, Robert, the seizure control you pray for every night happened but at a cost too high.

Now we are trying again but at half the original dose.  (I have to thank readers here and on the Robert’s Sister Facebook page for suggesting it.)

The neurology appointment was just over a week ago and I wanted to wait until the weekend to start the medication at the lower dose.  The week was full of chaos due to my mom-in-law breaking her femur and Robert on the edge of the pneumonia cliff (he’s off the antibiotics and the cough has returned) so thought it best for “life” to settle down before starting the new med.

Sunday night was the first dose.

By yesterday, he woke up extremely tired and slow and needed a lot of assistance dressing. That could be attributed to still coughing at night or staying up past bedtime to finish one of his puzzles (it happens). 

This morning, he was again sleepy and slow and just the slightest bit obstinate.  Walking seemed to be a challenge but, again, he could just be sleepy.

He has had one seizure since starting the new med and that happened this morning.  We’re watching him like a hawk and just keeping routines the same and working at earlier bedtimes.

If the medication doesn’t work out this time, there is another one the doctor wants to try and then there is the RNS.  Robert’s neurologist has mentioned it, said it recently was approved by the FDA and he has even requested it already.  The RNS would be available for Robert by late summer so we have a little bit of time to try other medications first.

Why, when Robert is almost 49 years old without seizure control and exhibiting the devastating effects of that, do we still try these new treatments?

My answer is simple: Robert is not giving up on his prayers and I don’t want to give up hope.