Ending the New Medication Experiment

At least Robert is happy when he's eating!

We have been trying the “new” seizure medication, in varying dosages, since February.  Robert’s neurologist thought we should try Trileptal so, in February, started him on 300 mg in the morning and evening.

After a week, we had to give it up. 

He was dizzy, cranky and could barely walk straight. Oh but it was heartbreaking because the seizures had stopped!

I didn’t want to give up so quickly so at the next neurology appointment, the doctor and I decided we could start it up again at a much slower pace.  We started out with Robert getting 150 mg in the morning and 150 mg in the evening. 

We kept him on this dosage for three weeks. Robert was cranky again and having a bit of difficulty walking but it wasn’t near as bad as the side-effects while on the higher dose.  The seizures weren’t completely gone but the frequency had been reduced significantly.

After about three weeks there were more seizures. More seizures but his moodiness was better and his walking had improved.  With the doctor’s approval, I increased the Trileptal again.  This time we went to 150 mg in the morning and 300 mg in the evening.  Richard and I thought if he had the stronger dose in the evening the side-effects wouldn’t be so bad.

It was a really, really good theory.

We have kept Robert on the 150/300 regimen for over a month.

Robert’s balance and inability to walk continued to get worse. There were times it actually seemed like he was getting better and the side-effects weren’t that bad but after looking at the log we keep, that just wasn’t the case.

The reality is he can barely move his legs in the morning. It is routine now for me to help him out of bed in the morning since he can’t get his legs working properly. Once he is up, he swerves with his walker with his right leg usually a few steps behind the rest of him and his walker pushed out as far as his arms can reach. No amount of coaching can get his legs and arms and brain working in unison or even staying in the same zip code.

Robert’s moodiness also continued.  Robert has always had angry outbursts (one time when he lived in an assisted living facility he yelled for the nurse to “go to hell.” When I talked to him about it he insisted he just said that in his head and certainly wouldn’t say that out loud!)

Those outbursts are infrequent.  Now they are an almost daily occurrence.  Robert gets angry at anyone and everyone – us, the transport drivers, the Day Program staff, the respite staff and the dogs.  He is hypersensitive to everything: noise, water temperature – even his gums are sensitive.

Day Program called to tell me that they are concerned about Robert’s safety. They have to occasionally put him in a wheelchair because of his fall risk but now he is arguing about having to sit in a wheelchair.

In addition to all of this, Robert developed excessive saliva which was not helping his congestion problem. He even choked a few times on it! Yikes!

It seems so obvious that we shouldn’t subject him to this medication with these awful side-effects but I kept thinking there were other reasons for these behaviors.  Maybe it’s the bronchitis he keeps getting; maybe it’s all the turmoil of the house upgrades; maybe his swallow problem is getting worse. Maybe he has some other problem going on that is unrelated to the medication.

It actually wasn’t so obvious with all these “maybes” swirling in my head.  Plus, it is hard to dismiss the fact the medication is working to reduce his seizures.

His seizures have dropped from a high of 59 in February to 54 in March, 40 in April and 20 in May. Oh my god!  He is having a third of the seizures he had before starting on the medication. A third!!

It is only because of this that I kept Robert on Trileptal for this long. I kept thinking the side-effects would wear off.  That we would see the “old” Robert and he would be able to move from room to room with some wobbliness but not what we’re seeing now.  That once the house was back to normal and his congestion cleared up we would see his mood improve and his ability to walk come back.

I wanted to be sure we gave this medication enough of a shot before saying, “Nope. It’s just not worth the cost.” 

I finally think we did. 

I have come to the conclusion we have to take him off this medication. I have a message in to the neurologist so he can tell me how long I should take to wean him off the meds. In the meantime, I reduced the dose back to 150/150.

We gave this a shot.  A really good shot but it’s doing more harm than good.  We have to give up on this medication. I hate to quit or give up on anything but I know it’s the right thing to do.

I still have faith we will find something that works but I am not looking forward to increased seizures in the meantime. 

This is Respite?

We are in the middle of sprucing up our house so we can sell it as quickly as possible and for as much as possible. 

For months after Robert moved in a year ago, I have been casually looking at available single story homes.  Richard and I have known even before Robert moved in that Richard would not be able to deal with stairs for too much longer.

Richard’s back pain is severe enough that he consciously plans his activities to go up and down the stairs the least amount he can.  After a back procedure or if his back is hurting even more than usual, we both wish we had a one story house or at least a bedroom downstairs. I have had to physically help Richard up the stairs, taking one painful step at a time, more times than he would care to admit.

This past Thanksgiving was the deciding point for me. We had grown accustomed to our family room being a family room by day and Robert’s bedroom at night. I was getting weary of pulling out the sofa bed each evening, adding mattress pads to make it comfortable as well as head and leg wedges for extra comfort and to help Robert’s congestion and edema.

Family room/by day; Robert's bedroom by night

The morning routine was reversed: strip the bed of wet sheets and blankets, put the wedges away and fold up the sofa bed.

All three of us and even the dogs were used to this routine but I had dreams of a one-story house where Robert had his own bedroom with a real bed and a bathroom with an actual shower.

On Thanksgiving, we continued the tradition of hosting dinner and Richard continued his custom of doing way more than he should. After I burned the rolls (more than once – hey, it was a new oven), eating too much and laughing with our immediate and extended family throughout, Richard slowly made the long trek upstairs to rest.

“Put a fork in me, I’m done,” he joked as he painfully made his way upstairs.

Other Brother watched the grimace on Richard’s face and the grip on the railing as he made his way upstairs and quietly said to me, “You guys need a one story.” 

Yep.  We sure do. 

We got serious about looking.  My daughter’s boyfriend, Matt, was experienced in flipping houses and knew what needed to be done to spruce the place up.  My first chore: start packing.

I waited to get started until after Christmas and Robert’s December hospitalization but once the New Year hit, I dove into packing the upstairs.  The plan was to paint the upstairs, replace the carpet and install new baseboards throughout the house. 

It took a while for us to get the momentum going but before long, Richard and Matt had figured out the cost of the remodel, the vendors to use and the schedule.

Richard also decided the house wouldn’t look perfect unless the whole house was painted.

Argh! More packing, more moving of furniture, more disruption.  I really wasn’t happy about the decision because of the work involved but knew it was the right choice. (Let’s keep that between us so Richard’s head doesn’t swell too much.)

Throughout the turmoil, Robert was a trooper. We kept a path clear for him so he could safely walk to his usual spots (dining room table, couch, front door and bathroom). Only a few times was it necessary for him to eat from a television tray but he thought that was fun. He had a few irritable moments but it is hard to know if that was from the disruption or the new medication he is still trying out.

Once the actual work started, I knew Robert would need to stay at his favorite care facility.  I set up his “weekend away” once everything was confirmed.

Since Robert is a client of the local Regional Center we qualify for a certain amount of respite hours per quarter (I have not yet been able to get his case manager to tell me the exact amount of hours we get so I suspect there is not really a specific formula.) 

During our last respite, Robert went to a wonderful care facility where he was spoiled rotten and probably gained ten pounds because they fed him like a king (and he was able to eat Rocky Road ice cream every night!).

Robert was happy with his own “vacation.” Richard and I went to Miami and then on a cruise to the Bahamas with his family and our caregiving friends. It was delightful!

This respite, we are sitting on the patio surrounded by boxes and keeping the dogs calm while strangers are in the house painting. The baseboards were done on Thursday, painting started on Friday and carpet will go in on Wednesday.

I picked Robert up from Day Program on Friday, took him to his beloved second home and will pick him up again on Monday. 

I treated him to a chocolate shake on the way to the facility.

“Thank you very much” was his excited reply.

I explained everything I packed for him: bible, clothes, briefs, pillows, blankets, white shirt for Sunday, and medications.

After I mentioned each item, he appreciatively replied, “Thank you very much!”

I kept telling him everything I packed (socks, pajamas) just to hear him exclaim, “Thank you very much!”

He was so appreciative and delighted to be going to The Place That Spoils Him Rotten.\

I stopped on our way to pick up a half gallon of Rocky Road Ice Cream. If he was happy about that white shirt, he was doubly happy about that ice cream.

He called last night to tell me how much fun he was having and asked if he could watch church on Sunday.

Yes, you have your bible and you can watch church on television. I told him I also sent his church DVDs (still being sent to him by the church he belonged to when he lived independently) and he could watch those if he wanted.

“Thank you very much!”

He is obviously still happy and enjoying his respite. 

Richard and I have made the most of respite as well – I am getting my elusive personal computer time (hey, I get to write a blog post!) and we have eaten out and even had gelato for dinner last night. It’s just like vacation only without the airfare and ocean breeze and with a lot more paint smell and moving of boxes and furniture.

The painting should be completed tonight – a little ahead of schedule which is awesome. We might be able to get a few things done tonight to get the house back to normal and then Robert will be back home tomorrow.  

I am happy we have a head start on packing for a move and am hopeful this house will sell quickly and we will find our dream one-story house.

Once this is all over, though, I will be ready for a respite involving some beach time, fresh ocean air and a lot fewer boxes.

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.