Video EEG: Process, Results and Decisions

A lot has happened since Robert’s video EEG in April and it all affects the direction we go with Robert’s treatment.  Caregivers make decisions every day about treatment and everything needs to be considered: how treatment will affect our loved one and their quality of life, the ability of the caregiver to manage the treatment and, of course, what our loved one wants or what we think he would want if he is not able to make his own decision.

A great deal of stress in caregiving comes from having to make these decisions about treatment and wondering if the decision is the right one to make for everyone involved.  These are not just decisions about what to eat for dinner or what to wear for the day (although, those add up too) but life and death, quality of life type decisions. 

There are other stressors while caregiving such as financial, time management, sleep deprivation (to name just a few) but making a decision for someone else’s treatment is a big one. 

We are making life and death, quality of life decisions all the time. 

Robert’s treatment has changed through the years but, since I took over his care ten years ago, it has only involved medication changes.  Those can be a bear!  Robert is on five different medications for seizure control and an additional ten for various other reasons (thyroid, Parkinsonism, GERD, allergies).  He is incredibly sensitive to medication changes so I am usually reluctant to try something new but if we do try something, we take it slow. 

I give the new medication some time to work but also to see if the side-effects subside or are something we can live with. 

And there are always side-effects.

Last summer Robert got a new neurologist.  She came from the UCLA Medical Center and is energetic, personable and had the goal of getting her patients to zero seizures. 

Zero seizures?  It never occurred to me that Robert could have zero seizures after having a lifetime of dozens a month.  After she recommended trying one new medication we dropped it as it seemed to be causing an increase in seizures!  (*insert buzzer sound here*)  Rejected!

That didn’t hinder Dr. K’s enthusiasm for finding a solution for Robert.  She told me how experienced she was with the NeuroPace and had high hopes that it could greatly reduce Robert’s seizures and even, eventually, allow us to reduce some of his seizure medications.  It sounded very promising so we decided to explore that option.

The first step was the Video EEG.  After getting the team together (because a VEEG requires a team) we were on our way!

I didn’t really know what to expect from the VEEG but did some research and prepared the best way I know: create to-do lists and a schedule! 

The VEEG usually lasts from Monday through Friday and requires 24 hour monitoring by a family member.  Robert gets hooked up to the EEG monitor and is on a video monitor but the caregivers are expected to press a button to flag when a seizure occurs. 

It is a huge commitment but we all knew how important it was to do this in order to give Robert a chance at fewer seizures. 

I explained what I knew about the process to Robert and told him Richard (brother-in-law), Rich (Other Brother) or I would be with him the whole time.  He’s usually a pretty good sport (unless he is on a new med) so he was game for the VEEG.  All he needs to be happy is his word search book, some television shows and good food.  I brought Robert’s word search, knew he would have a television and since Robert is a fan of hospital food we were all set.

Richard and I took Robert in on Monday and the leads were meticulously applied to Robert’s scalp.  I think they pretty much covered every inch of his head!  The smell of the glue they used was horrific but that dissipated after a while (or we just got used to it).  The tech was extremely patient and kind during the process and answered all the questions we had about the process. 

She explained the leads would stay on for a full five days and they could be reapplied if any come off during the week.  She hooked up a respiratory belt, EKG leads, pulse meter and a nasal cannula.  The nasal cannula and pulse meter can be unhooked when Robert needs to go to the restroom but the rest of it is attached to a very long cord which Robert will carry with him to the restroom. The only time Robert can get out of bed is when he is using the restroom. 

I think this limited mobility would drive most people crazy but Robert didn’t seem to mind.  Robert enjoys (a little too much) being waited on so this was certainly not an inconvenience to him. 

We met several members of the neurology team the first day and they ran a bunch of baseline tests (blood work to check medication levels, chest x-ray, neuro exam).  It was a flurry of activity the first day and they started lowering his seizure medications that first evening. 

By Tuesday morning, Richard noted some confusion when Robert woke up.  Robert thought he was in the commercials and called Richard “John.”  Most likely, this indicated a seizure while Robert had been sleeping. 

I took over in the afternoon (after a work meeting and my own ultrasound) and by evening Robert was shaky and his pulse was high.  This is an indicator that seizure activity is coming.  Rich took over Tuesday night and Robert stayed up until 11:00 working on his word search puzzle.  His schedule is always out of whack when he’s in the hospital.  Rich noted a seizure at 1:15 a.m. 

By Wednesday morning, the seizure meds had been stopped.  Robert ate some of his breakfast (scrambled eggs and biscuits & gravy) and worked on his word search puzzle. 

I also got the results of my carotid artery ultrasound and everything looked normal!  Woohoo! 

Robert gave up on eating the scrambled eggs which is unusual for him. 

By 9:20 that morning, the seizures were in full force. 

This was his typical cluster of seizures: his head moves to the far right and each one lasts 15 – 20 seconds.  He sometimes moves his head back and forth and gets what I call “seizure mouth” (his lips purse together and his face droops).  After several of these he had a couple of longer seizures (about a minute each) with moaning and moving of his right leg.  He was very disoriented. 

The doctors gave him some of his regular seizure medications to stop/slow the seizures but they were cautious about giving him too much.  They were hoping to do a SPECT scan on Thursday and they needed him to have a seizure during the test.  This test is basically a CT scan with radioactive dye injected at the first sign of a seizure so they can pinpoint exactly where the seizure is coming from. 

Robert continued to have seizures every 10 minutes or so.  The doctors decided to give him enough meds to stop the seizures regardless of the effect on the test scheduled for Thursday.  By this time, the goal was to stop the seizures. 

By 3:30 p.m., the seizures hadn’t stopped and he was wheezing, confused, shaky and pretty much out of it.  He was given Ativan as well as a loading dose of Vimpat (a medication he was not on at the time). 

After all that medication, the 3:30 seizure was the last one for the day.  Robert’s breathing continued to be labored and he felt very warm to me.  I asked the nurse take his temperature and, sure enough, it was high and his pulse rate was extremely high.  Robert most likely aspirated during the seizures causing aspiration pneumonitis (this is a frequent occurrence during Robert’s seizure clusters). 

Rich took over that night and noted that Robert tried to do his word search puzzle but ended up just holding the pen and paper.  They both had a restless night due to the doctors starting IV antibiotics and the IV getting clogged with the antibiotics/malfunctioning.  At this point, Robert clinically had sepsis but if you are going to get sick, the hospital is the best place to do it! 

It was quite a balancing act of trying to continue to get as much information about his seizures while also treating the aspiration pneumonia. 

The hope was the doctors could still capture a seizure during the SPECT so he was taken to radiology Thursday morning.  The isotope has a short shelf life so they waited for a seizure for as long as they could.  I couldn’t go to radiology with him so I went to Starbucks, came back to the hospital cafeteria and got something to eat and tried to relax. 

After several hours, Robert was back in the room.  Unfortunately for the purposes of the test and gaining more information, he didn’t have a seizure.  They rescheduled the SPECT for Friday morning. 

Robert was not going to be released on Friday as originally planned since he needed to be seizure free for 24 hours and he was still being treated for the pneumonia. 

They changed his antibiotics to Vancomycin on Friday.  He was still running a high fever and was not on his usual seizure medications.  They wanted to try the SPECT scan again.  I was exhausted by this point, Robert was an absolute mess of confusion and illness, and I was ready to call off the SPECT. 

I ultimately decided to let them try it one more time.  We had already been this far and I wanted the doctors to get as much information as possible so we could decide on treatment options later. 

Finally!  They were able to capture a seizure on the SPECT scan.  Once he was back in the room, they loaded him up with an IV of Depakote and started his regular medications.  All the leads were removed from his head! 

Now we had to get him past the infection. 

Robert was put on another antibiotic (I’ve lost track of how many they tried but I think we’re up to four or five). 

Later that day, his white blood count was trending down and by Saturday the doctor left it to me to decide if I should take Robert home or keep him one more night.  I opted to keep him on the IV antibiotics one more night just to be on the safe side. 

Robert was more alert and feeling better by Saturday afternoon so I took him on a field trip to the cafeteria.  We were almost at the end of this ordeal! 

Robert’s WBC was low enough on Sunday that I was comfortable taking him home.  I brought donuts for the nurses to thank them for their care during our eventful week and was happy this was over.

My overriding hope after all this was that the doctors gained enough information to make a recommendation on treatment going forward.  I definitely did not want us to have gone through this for nothing. 

Six weeks later, I had my stroke and I will share in my next post what we learned from this VEEG, our treatment options and how my stroke plays into our decisions.

Juggling, Teamwork and a Little Hope

My IT guy at work juggled three oranges at work the other day and made it look pretty easy.  (I then told him to get back to work.)  I have tried to learn to juggle but I am not quite coordinated enough. The juggling I do involves caregiving, medical appointments and various emergencies. 

Caregivers are experts at this type of juggling and sometimes even while we work. 

Thankfully, Richard helps with juggling our appointments.  We have a loose division of duties: he takes his mom to her appointments, I take Robert to his, Richard goes to his own and I go to my own.  (Hopefully, mine will be short-lived.  My MRI results came back normal(!) and I only have a follow-up with the neurologist. Then I’m crossing myself off the appointment list!)

Family!

We have pre- and post- surgery appointments, wound therapy, neurology, epileptologist, GP, pulmonary, ENT and cardiology appointments.  There’s pain specialists, physical therapy, lab work and x-rays when something is not quite right (like suspected pneumonia or artificial knee pain).

With the regular appointments and even ER visits or hospital stays we somehow manage to keep on track.  (It helps that Richard, Carol and I coordinate our calendars to be sure we all have the same information.) 

Sometimes we have to call in extra help, though.  Richard’s brothers, either Mark or Jim, will take Carol to her appointments if they conflict with one of Richard’s appointments.  Rach jumped in to take me to the ER so Richard and Carol could stay home with Robert and has stayed home with Robert while I pick up Richard from the hospital. Mark and Carol jumped in to help with Robert when he was sick and I needed to take Richard to get staples out of his leg.  

In other words, we juggle.

And we are very lucky. We are extremely fortunate to have the support of our families as I know many caregivers do not have that option. 

I am extraordinarily grateful to our family for their help and, while it is difficult for me to ask for help, sometimes I actually do it.

Robert has a VEEG (video EEG) coming up next week which requires him to be in the hospital for five days.  It also requires someone to be with him all the time.  As in, day and night.  To be clear, I am talking about all 24 hours in a day.  For a week.  And, we have to be alert and awake the whole time in order to push a button when he has a seizure.

I do tend to take on a lot but even I realize neither one of us can stay awake all week.  Heck, I don’t even think it would be possible for just me and Richard to do it.  (Although, that was our initial plan.)

I texted Other Brother for help.  I explained the situation, told him I was making a schedule and asked if he was able to come up to be with Robert for a shift.

“You mean like through the night?”

I know.  It’s a big ask.  It would be nice to have an extra relief person so Richard and I weren’t doing the whole week.

“How long are the shifts?  Are there any food or bathroom breaks?”

I gave him more info about how the whole thing works, logistically.  Of course, I am just going off of the booklet the hospital mailed us – I haven’t actually done this before so don’t know how it will actually go.  I mean, does the nurse come in and poke us if we accidentally doze off?  Does the guest chair trigger alarm bells if there’s no movement for a few minutes?  Or does it just spring us out of the chair to wake us up?

After ribbing him for all of his questions (as only an older sister can), Other Brother offered to take two of the overnights which was a huge help. I thanked him profusely!

“Can I take a laptop?”

Oh crap. I thought for sure this was a deal breaker. 

Um, no.  No laptops or phones.  We can’t have the signals interfering with the monitoring equipment.  I did suggest long bathroom breaks if he had to use his phone . . .

Carol and Robert share a special bond

I created a schedule for the three of us and sent it to Other Brother.  He reviewed it with his wife who suggested he stay in a hotel for a few days so he’s not driving back and forth on no sleep.   He can do his shift, sleep in the hotel, drive the hour or so back to home/work and then repeat it the next day. (Good thinking!)  Other Brother revised the schedule, adding another overnight shift for him with even longer hours.  What a wonderful surprise and such a huge help!

Carol is planning on holding down the home front and doing laundry and caring for the dogs while Richard and I take turns at the hospital and I try to go into work for an hour or two.  In fact, she feels ready to move back to her own home but is postponing it so she can help us out. (We wish she wouldn’t move home but that’s a different story.)  Rach and Matt are planning visits to the hospital to check on us and to the house to check on Grandma.  Mark even offered to take a shift but he recently started a new job and I don’t want him missing work on our account. 

We are very lucky indeed!

We all see the value in the VEEG and know how important it is for Robert to have this testing.  This is a step toward getting the Neuropace for Robert which seems to be a very promising treatment for him!  Robert’s new neurologist thinks he is a great candidate for the Neuropace and thinks this could significantly reduce his seizures.  If that happens, he might even be able to reduce some of his meds.  Can you imagine?! 

Everyone is willing to pitch in because we all see the possibilities of this new device.  We see the hope.  We see Robert’s fervent wish and prayer to be seizure-free as close to possible as we’ve been. 

This is truly a team effort of juggling to support each other.  That is what family is all about and I am so grateful.