Cleveland Clinic Day 6

Saturday and we’re still here.

Lisa’s been stepped down off of all of her medications. Talking with the doctors and the ward nurses, it isn’t uncommon for this to happen. A child is brought to the ward, hooked up to all of the equipment and … the waiting begins. She’s had a couple of dizzy spells, some hand trembling, and some stomach activity reminscent of the very early seizures but nothing useful that could be captured on the EEG.

The most nerve-wracking thing about this is that she has a tendency to go into status very quickly so we were hoping to capture the information we needed while she still had some drugs in her system. Lowering her doses feels a little like playing Russian Roulette.

The other problem is that sitting around with no symptoms gets your hopes up. “Wow, maybe she’s been miraculously cured while we weren’t looking.” But this doesn’t really happen, not after this many years.

So, the waiting continues. Lisa’s now been through a Mork and Mindy marathon, a Bob Newhart Show marathon, is caught up on all of her homework, and has watched nearly all of the DVDs she brought, including all 3 Spiderman movies. We should have packed more movies. It’s like the Gilligan’s Island folks – they thought they were going on a 3 hour tour…

Advertisements

Cleveland Clinic Day 4

Happy Thanksgiving! Thanksgiving day and we’re still at the Cleveland Clinic.

Wednesday afternoon, we got to see some of Lisa’s MRI. There is some swelling in locations we didn’t know about but it seems pretty certain that 1) her speech and memory are localized on the left side of the brain and 2) the seizures are originating from the right side. These are good signs in terms of whether or not surgery would be effective. 

But, we haven’t had any luck getting seizure readings. Today, we agreed to reduce her anti-seizure drugs. She’s currently on four different meds: Lamictal, Keppra, Topamax and Trileptal. Tonight, we’ll take her off of the Lamictal then tomorrow morning, we’ll drop Topamax.

Some of the things we’re thankful for:

  • family
  • church family
  • enough food
  • music
  • our crazy dog
  • fangfish (redfang triggerfish)
  • board games

 

 

Cleveland Clinic day 3 – 10a.m.

Cleveland Clinic day 3 – 10a.m.

It’s still early in the day, but the good news right now is that the WADA test has been cancelled. Or at least postponed. We’re hoping to meet with Dr. Kotagal later today to see what the plans are going forward.

Lisa is still on her regular medications for now. Last time around, they dropped her doses to 0 to induce seizure. But after the nearly two-hours it took to get her back from status, we’re all being more conservative this time around.

The techs came today and added about a foot of wire to her left sphenoidal sensor. When the original doctor put it in, the wire knotted and she had to cut it short. Not a big deal for the monitoring devices, but it really restricted Lisa’s ability to get around. If she needs to get out of bed for anything, she has to disconnect herself from the monitors and carry the device the electrodes are plugged into around with her. With yesterday’s broken wire, she couldn’t hang the device around her neck like she could on Monday, but had to hold it very close to her shoulder. So, the added wire gives her more freedom.

Another of Lisa’s nurses from the 2005 visit came on duty today, always good to see familiar faces.

Cleveland Clinic Day 2 Info

This is actually being written the morning of day 3. Not that day 2 was eventful – it wasn’t.
.
The day consisted of Lisa laying in bed connected to the visual EEG machine and hoping for some seizure activity. The idea is to monitor these seizures to find out where they are originating. We’re assuming that everything originates from the site of the injury, but we need to make sure.
.
I spent the night back at the Ronald McDonald house, Jean stayed with Lisa. We learned last time that trading off kept us fresh. I spent most of Monday night learning about blog sites, beading, and reading about the WADA test and functional MRIs.
.
The WADA is a big subject right now in that Lisa is scheduled to have one on Wednesday but we don’t think it’s a good idea. Talking with Dr. Kotagal on Monday, it seems that if Lisa isn’t a candidate for surgery, there’s no real reason to have the test. Dr. Tuxhorn who is also working on the case, agreed that it was a good subject to reconsider – why do the test if Lisa won’t have the surgery?
.
Without going into a lot of detail (and given that I’m a layman explaining what he read in pamphlets and on the internet), it sounds like the two tests gather mostly the same data. The functional MRI seems to be the non-invasive alternative to the WADA. The WADA test involves entering through the femoral artery (in the thigh) with a catheter that then numbs each side of the brain successively for testing. The goal is to learn which hemisphere processes language and memory. From that, we should get a good sense of any risks involved with the surgery.
.
I tried explaining it to Lisa but I was a little careless with language and ended up making her more anxious, not less. I start with “they drill a small hole in your leg…” which was definitely the wrong way to start. While I was thinking of a tiny incision in the thigh, she was having flashbacks to Weird Al’s video for “Like A Surgeon” in which one of the docs is seen holding a power drill with a twelve-inch long 1/2″ bit, smiling maniacally as he zeroes in on a bull’s-eye painted on the patient. Bad choice of words, dad.
.
Allison, her Nurse Practitioner, came in later and explained it to her again, after which Lisa felt much more comfortable. Not looking-forward-to-it comfortable, but not dreading it either. She’s concerned it’s going to “feel weird”. Fair enough.
.
They did insert the sphenoidal electrodes as well. Lisa had these last time too. The doctor inserts a wire into the cheek just below the cheekbone on both sides. The sphenoidal electrodes gather information that the standard electrodes miss. Given the expected point of origin for Lisa’s seizure, this test is pretty much necessary.
.
AND, Lisa’s been through another photo shoot.
,
While we were watching television in her room, a small group of people came by – two hospital reps, a photographer, and the Social Worker. They were taking photos of patients for use in promotional things like the annual report and Lisa was one of the kids they picked. We’ll be peeking at their webiste to see any of the photos end up there.

Cleveland Clinic Day 1 (Reflections)

Being back in the Cleveland Clinic, going through the tests, the consultation with the doctor, walking to the cafeteria all bring back memories. Last time around (2005), we were new to the whole thing. Now, we feel like regulars. We have at least two of the same nurses. Aside from the fact that it reminds us that we’ve been through this before, it’s a bit comforting.

The single thing that stands out most prominently to me is trying to explain Lisa’s condition. Every time I hear the question “When was her last seizure?” I hear “when was the last time she went into convulsions?”. I immediately feel that I have to tell the person her entire history: the crash, 2 weeks in coma, years of carrying around carrying that plastic bucket in case she threw up, then years of waking up in a panic and pleading “walk with me, I have to walk around” followed by the terrifying episode in the van – her first seizure – then three (four? – I should know that) episodes of status epilepticus.

Status is a life-threatening condition in which the seizure lasts more than the normal 5-10 minutes. I just looked it up on a medical site and the description says “5-10 or even 20 minutes”. We WISH! A typical episode saw her seizing for an hour-and-a-half while the doctors and nurses did everything they could. It’s scary to hear comments like “no, that can’t be right, we don’t give that much mediation to an adult…”

As usual, we’re very optimistic. Dr. Kotagal and the hospital staff are great to work with, Lisa feels completely safe here and we have a huge network of prayer and support around us.

Cleveland Clinic Day 1 (Information)

Mon Nov 24, 2008 – 1600
.
Today is the first day of our second trip to the Cleveland Clinic. Technically, it’s the second day as we arrived on Sunday at around 10p.m. We left home around 6 and drove straight through except for a half-hour stop along the turnpike for a fast food dinner. We checked into the Ronald McDonald house, room 225. Dad fell asleep almost immediately, but mom and Lisa had a harder time falling asleep.
.
We took the shuttle at 7:00 from the hotel to the hospital. The shuttle driver was very helpful, she dropped us off across the street from the entrance to building L which houses the MRI units. Jean filled out some paperwork and at about 8:30, Lisa and I were escorted by Glenn to the changing room. We got into hospital scrubs and waited in the 2nd waiting room. Craig the RT provided some reading material that outline the tests Lisa would be given.
.
She was scheduled for an fMRI, a functional MRI. The tests involve putting her into the MRI machine then having her perform a variety of motor and mental tasks while the techs monitor and record the patterns of brain activity. The fMRI consists of four tests:
  • The first is a simple motor task, touching the tips of the fingers to the thumb, one by one, over and over in succession until they have enough information and tell her to stop.
  • The second test consists of ‘rhyming’ tests. A variety of images are projected on to a screen that Lisa will see in a mirror positioned just above her face. She’s to think yes if the words rhyme (“day” and “weigh”) and think no if they don’t (“ballet” and “wallet”). She may also be shows two images, series of vertical and diagonal lies, and press same buttons if they are the same or different.
  • The third test also involves watching projected images. Some will be nonsense characters, in which case she is to just rest. But others will be letters. When a letter is projected, she’s supposed to think of as many words as possible that begin with the projected letter.
  • The fourth and final test (of the four we remember, it seems like there were five, but neither of us can come up with a fifth) was listening to a story. The story would be read in short sections. But sections of it would be read forward and backward alternately. She could rest during the backward sections but was to pay attention during the forward sections. Afterward, she’d be asked a series of questions evidently to test comprehension and/or recall.
They slid her into the machine at 9:05 and tested her until nearly 10:30. Dad stayed in the room for moral support. Craig generously provided earplugs for dad – which didn’t really occur to Dad, though having been around MRI machines before it was no surprise.
,
After the tests, we headed back to the main hospital for an 11:00 meeting with Dr. Kotagal. But we had no idea where were supposed to be. This circles back to the last few days before we left. Jean had been on the phone with the Clinic getting things set up. They’d agreed to send out an itinierary via DHL. But it didn’t arrive in time so we came in fairly blind. We knew about the 8:30 and the 11:00 on Monday but the rest of the week was (and still is at 16:45 Monday) hazy. 
,
With a couple of phone calls, we found out where we were supposed to be and headed there. After finishing another round of paperwork, we were led into a nurse’s office. Where we did some more paperwork. Then, to an examining room where we talked with Dr. Kotagal. He interviewed us about Lisa’s condition, her history since our visit in 2005, her medications, and a small bit about the upcoming tests. We made a request to postpone the WADA test until we knew for sure Lisa was a candidate for surgery. The test involves numbing each side of the brain separately in order to learn about which areas processspeech, visual, auditory, etc. in anticipation of the surgery. But there doesn’t seem to be a point in doing the test right now until we know if she’s a candidate for surgery at all.
,
We got through the discussions with him then headed to Lisa’s room, where’s she’ll be monitored for two or three (or more) days until they can record some seizure activity. We dropped off the several bags of clothes and provisions we brought with us, then headed down to the cafeteria for breakfast/lunch (at 2 p.m.).
,
Back to the room, where Lisa was attached to the monitoring device. A set of about 20 electrodes were connected to her head then to a monitoring device. We can watch the lines do their peak-and-valley measurements of brain activity. None of it means much to us, but we can see some differences when watching her chew, laugh, or just relax. Our understanding of the device is that it’ll help locate the starting point of the seizures. One stick point is that they may have to reduce her medications to prompt a seizure. .
.
This is scary to us in that her seizures move quickly to status epilepticus. They’re going to monitor her for the rest of the night with her normal doses of medication and talk about lowering the doses tomorrow.
.
Lisa got to do some singing earlier tonight. A med student was walking around the ward with a guitar. He was going to sing Happy Birthday to You to the 1-year old in the room next to us. We waved him in and asked for a song. His first suggestion was Brown Eyed Girl, which we jumped on. Afterwards, dad asked Lisa if she wanted to do Wonder Drug. So, we borrowed the guitar and went through it. The nurse in the room and the man from the Child Life program (Tom …) both asked if the song was posted anywhere. Not yet, but… 🙂
.
Currently, Lisa’s just finishing dinner and watching Disney channel. Mom’s trying to catch some sleep and dad’s just finishing up these notes. More later.

Monday Nov 24, 2008 – Lisa and Cleveland Clinic

Today is the first day of our second trip to the Cleveland Clinic. Technically, it’s the second day as we arrived on Sunday at around 10p.m. We left home around 6 and drove straight through except for a half-hour stop along the turnpike for a fast food dinner. We checked into the Ronald McDonald house, room 225. Dad fell asleep almost immediately, but mom and Lisa had a harder time falling asleep.
We took the shuttle at 7:00 from the hotel to the hospital. The shuttle driver was very helpful, she dropped us off across the street from the entrance to building L which houses the MRI units. Jean filled out some paperwork and at about 8:30, Lisa and I were escorted by Glenn to the changing room. We got into hospital scrubs and waited in the 2nd waiting room. Craig the RT provided some reading material that outline the tests Lisa would be given.
She was scheduled for an fMRI, a functional MRI. The tests involve putting her into the MRI machine then having her perform a variety of motor and mental tasks while the techs monitor and record the patterns of brain activity. The fMRI consists of four tests:
The first is a simple motor task, touching the tips of the fingers to the thumb, one by one, over and over in succession until they have enough information and tell her to stop.
The second test consists of ‘rhyming’ tests. A variety of images are projected on to a screen that Lisa will see in a mirror positioned just above her face. She’s to think yes if the words rhyme (“day” and “weigh”) and think no if they don’t (“ballet” and “wallet”). She may also be shows two images, series of vertical and diagonal lies, and press same buttons if they are the same or different.
The third test also involves watching projected images. Some will be nonsense characters, in which case she is to just rest. But others will be letters. When a letter is projected, she’s supposed to think of as many words as possible that begin with the projected letter.
The fourth and final test (of the four we remember, it seems like there were five, but neither of us can come up with a fifth) was listening to a story. The story would be read in short sections. But sections of it would be read forward and backward alternately. She could rest during the backward sections but was to pay attention during the forward sections. Afterward, she’d be asked a series of questions evidently to test comprehension and/or recall.
They slid her into the machine at 9:05 and tested her until nearly 10:30. Dad stayed in the room for moral support. Craig generously provided earplugs for dad – which didn’t really occur to Dad, though having been around MRI machines before it was no surprise.
After the tests, we headed back to the main hospital for an 11:00 meeting with Dr. Kotagal. But we had no idea where were supposed to be. This circles back to the last few days before we left. Jean had been on the phone with the Clinic getting things set up. They’d agreed to send out an itinierary via DHL. But it didn’t arrive in time so we came in fairly blind. We knew about the 8:30 and the 11:00 on Monday but the rest of the week was (and still is at 16:45 Monday) hazy.
With a couple of phone calls, we found out where we were supposed to be and headed there. After finishing another round of paperwork, we were led into a nurse’s office. Where we did some more paperwork. Then, to an examining room where we talked with Dr. Kotagal. He interviewed us about Lisa’s condition, her history since our visit in 2005, her medications, and a small bit about the upcoming tests. We made a request to postpone the WADA test until we knew for sure Lisa was a candidate for surgery. The test involves numbing each side of the brain separately in order to learn about which areas processspeech, visual, auditory, etc. in anticipation of the surgery. But there doesn’t seem to be a point in doing the test right now until we know if she’s a candidate for surgery at all.
We got through the discussions with him then headed to Lisa’s room, where’s she’ll be monitored for two or three (or more) days until they can record some seizure activity. We dropped off the several bags of clothes and provisions we brought with us, then headed down to the cafeteria for breakfast/lunch (at 2 p.m.).
Back to the room, where Lisa was attached to the monitoring device. A set of about 20 electrodes were connected to her head then to a monitoring device. We can watch the lines do their peak-and-valley measurements of brain activity. None of it means much to us, but we can see some differences when watching her chew, laugh, or just relax. Our understanding of the device is that it’ll help locate the starting point of the seizures. One stick point is that they may have to reduce her medications to prompt a seizure. This is scary to us in that her seizures move quickly to status epilepticus. They’re going to monitor her for the rest of the night with her normal doses of medication and talk about lowering the doses tomorrow.
Lisa got to do some singing earlier tonight. A med student was walking around the ward with a guitar. He was going to sing Happy Birthday to You to the 1-year old in the room next to us. We waved him in and asked for a song. His first suggestion was Brown Eyed Girl, which we jumped on. Afterwards, dad asked Lisa if she wanted to do Wonder Drug. So, we borrowed the guitar and went through it. The nurse in the room and the man from the Child Life program (Tom …) both asked if the song was posted anywhere. Not yet, but… 🙂
Currently, Lisa’s just finishing dinner and watching Disney channel. Mom’s trying to catch some sleep and dad’s just finishing up these notes. More later.