Happy Life Day

Today is our anniversary.

 

One year ago today, on May 1 2019, my son Weslee entered the hospital for an exploratory brain surgery called SEEG. He had a very rare side effect to a seizure med that caused massive brain bleeding during the surgery, so he had a stroke. He was put in a ventilator, and before he left for a Neuro rehab hospital at the end of May, he had had 8 more surgeries. He came home, finally, after a total of 35 days, still relearning to hold a cup, talk, walk, think, etc. 

It has been a struggle this past year. He still uses a cane to walk, tires easily, has to take a nap almost daily. He has huge gaps in his memory, has developed a facial 'tic', and still has the brain drain (shunt).

I am so thankful every day for Mr. Shane, the nurse on the ICU floor who first noticed Weslee wasn't responding to stimuli as expected.  He noticed it in the nic of time; his surgeon said Weslee would have died that night if Shane hasn't caught it, and if the surgeon hadn't immediately taken him back to the OR for emergency surgery.

So...today, Weslee and I will celebrate his LIFE day.



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I sent a dozen specialty cupcakes to the ICU ward (but Mr. Shane no longer works there..bummer). And even though Weslee is taking a nap right now (2:30 p.m.), I ordered a 4:00 p.m."linner" for us from his fave place: Cheesecake factory.

Day 4 after SEEG Surgery

Another Thursday picture!

Pic from May 4 2019 at 12:52 p.m. 

He is a tiny bit more alert here. The tubes and bag that have red stuff in them ... that red stuff is from his brain... blood, spinal and brain fluid, etc. If he didn't have these brain drains, he would be dead. 

And, as you can tell, he still has the SEEG wires in his head. They wouldn't take them out until his brain swelling goes down some. Otherwise, could do even more damage.

Sick with the Flu

I wrote on this blog recently that people with epilepsy usually have a compromised immune system, so need to do everything possible to stay healthy.  Supplements, fruits and veggies, and exercise don’t always keep the bugs away.

My own immune system is severely compromised, and now my Weslee has caught my flu. Despite coughing into my sleeve or away from him, and foregoing our evening kiss, his typical every day cough became intense two days ago. We have stayed home, isolated from everyone.

Last night's dinner was homemade chicken soup.  Just might be tonight's too.

And more medicine.

 

Please send healing thoughts to me and wonderful son.  Thanks!

Pic of Weslee 3 days after SEEG Surgery Gone Wrong



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This is another Thursday picture of Weslee's SEEG surgery and the ordeal after.

 

May 3 2019 at 6:40 p.m. ... day 3.  The breathing tube came out shortly before I took this pic.  It had been nearly three days ... since I nearly lost him.

 

Note the staples on the right side. That is where they went in to do the surgery to release pressure from the swelling in his brain.

They left in the "white plugs" which are the SEEG probes. With the brain swelling, the data will be useless so they were removed eventually.

 

Hey...at least he is alive and awake here! 

Day 2 after SEEG surgery

Another Thursday picture from Weslee's SEEG surgery.

This pic was taken the day after the SEEG surgery, on May 2 2019.  He is still on the breathing tube and spends 99% of the time asleep. At least, I always considered it asleep. It was the only way I could deal with all of this.

Yes, can you say ... denial ?

I kept talking to him, telling him he had to stay with me, to get better, to open his eyes. That I loved him.

Pic of Weslee later on May 1 2019 after SEEG

Another Thursday pic!

This was taken on May 1 2019, the day of his SEEG surgery, but later in the day. 

Weslee had troubles waking from the anesthesia from the surgery. The recovery department didn't seem concerned and moved him up to ICU within two hours.

A very on-the-ball nurse, Mr. Shane, noticed that Weslee was super lethargic, not really waking up enough to interact, and unable to squeeze his left hand. It didn't seem right so he immediately called the neurosurgeon who was still in the building and came quickly.

He ordered a CAT scan for ASAP, and once he had the results, he explained: Every probe the surgeon put in caused bleeding in the path/track.  Some people can bleed from one, or maybe even two but the neurosurgeon said he had NEVER heard of every probe causing bleeding.  The bleeding caused the brain to swell.

Then ... I will never forget the surgeon taking me out of the room and telling me that if he did not immediately go back in and relieve the pressure, he will die.  Not could.  WOULD.  Would die.

I couldn't believe what I was hearing, and despite my wanting to fall apart, I didn't. I bucked up, signed the paperwork, and he left to book the OR. Weslee went within the hour for the emergency surgery (his 2nd of the day) to release pressure and install a brain drain.

While I waited, I sobbed the whole time.  "Would die.  Would die."  It kept replaying. I couldn't lose one of the few people I truly care about.

Weslee came back to the room in a couple of hours.  He had had a stroke and couldn't function, so he was put on this breathing tube.

Pic of Weslee Right After SEEG Surgery

I decided to post some of the pics I took of Weslee's 2019 surgery. Look for them every Thursday!


Weslee's seizures had been progressively getting worse since my 2016 diagnosis of breast cancer. It was stress about the possibility of losing me.

Once my son and I moved from Colorado to Kentucky mid 2018, I found him a new epilepsy team.  After a stay in a local EMU during Thanksgiving 2018, the team decided to get a neurosurgeon involved.  The team reviewed the EEG data, the 3T-MRI and CAT scans. We then discussed the need for more information before even thinking about a VNS or RNS or taking more of his brain out.

He scheduled an SEEG. He said he had performed it many times, with very few problems. I researched the procedure, and found it to be relatively safe.

(Stereoelectroencephalography  is an invasive surgical procedure that is used to identify areas of the brain where epileptic seizures originate. During the SEEG,  doctors place electrodes in targeted brain areas, which are then monitored to precisely locate the seizure source.  Source: https://my.clevelandclinic.org/health/diagnostics/17457-seeg-test)

This picture is my Weslee, shortly after moved from recovery to ICU. He's very drowsy here. Hard to wake up.

Only a small seizure caught

Weslee's at-home EEG finished this morning, and the leads etc off by 11:00.  I sure hate getting the glue off of his head!  Especially since his skin is so thin at the scar site. The name of the game is: gentle.

As far as seizures, Weslee had only one of his new "slam almost-seizures" - some new form of simple partials.  He has been having "almost seizures" for a few years - It feels to him that his brain is going to go into a tonic clonic seizure but didn't.  Two weeks ago, these new "slam"s added an intense staggering feeling to the beginning of them. We have no clue what these exactly are, or if they are even seizures, but we hope to find out definitively once the EEG tape/data has been read.

Trying to provoke a seizure

Day 2 of the at-home EEG.

Here's a pic of Weslee watching the "Incredibles 2".  It almost always brings on a tonic clonic seizure within 24-48 hours.

By the way, for information on movies that may provoke seizures or other health problems, go to https://moviehealthcommunity.tumblr.com/.  I don't like how the website shows up on my laptop, but it does ok on my tablet.

At Home EEG

While Weslee hasn't had a tonic clonic seizure since his May 1 2019 surgery, his little seizures are coming back slowly.  This at-home EEG was scheduled to see if we can figure out where these little ones are coming from, or if they will show up at all!

Almost all of Weslee's EEGs were done in the EMU ward in hospitals.  This is only the second done at home.  Still, we knew what to expect.  Video/audio camera recording everything.  EEG leads glued on (nasty stinky smelly glue) then the head is wrapped. At least he can walk around a little because the "pony tail" is battery powered and in a fanny pack.

We pulled out the couch into a bed and surrounded him with his movie binders, books, tablet and phone so he wouldn't need to go upstairs for anything.

And the video camera stays in the corner of the living room so he has privacy in the bathroom.

If you've been diagnosed with epilepsy, then you too know what it's like to be attached to an EEG pony tail!

After Chelsea finished applying the leads and wrapping him up, she did breathing and flashing light activations.  Nothing.

Another Side Effect from Hospitalization

Not for weak stomachs!

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As I've written about, Weslee went into the hospital on May 1 for a SEEG procedure, which went very badly. Brain bleeding, shunt placement, and lots of various therapies needed.

A few weeks ago, after Weslee got a buzz hair-cut, I noticed what I thought at first was dandruff but turned out to be crust from dried brain fluid.  It was leaking from his 2013 surgery scar, NOT from the 2019 scars.  Weird, I know.  I took him back to his neurosurgeon, where they put in a stitch and put him on antibiotics. It healed well. Or so I thought.

Today I took him for another haircut.  Found more crusty stuff.  Back to the neurosurgeon.  This time it was discovered that it was just oozing so instead of a stitch, we got a little pot of antibiotic cream and another around of antibiotic pills.

Unfortunately, he is scheduled for an at-home 72-hour EEG test starting tomorrow so he will only get the cream tonight and tomorrow, then we wait to apply more until after the EEG.

Here's picture I took after the first application of cream.

(The waves have been there since his 2013 surgery. No one knows exactly what they are, but they think it's just edema - fluid that has collected. Kinda cool but makes shaving his head difficult.)

The neurosurgeon thinks these leaks are from pressure building up, but not from his brain bleeds. That maybe the skin from the 2013 scar was weak / thin anyway, and the haircuts are cutting into it (not likely - I watch like a hawk). Or maybe he's scratching it without realizing it. Or maybe the extra fluid is looking for another way out besides the shunt. No clue.  Hoping this won't continue.

Weslee Update - July

July 25
Part of Weslee's setback involved leaking brain fluid, pressure behind his eyes, missing memories, and loads of missed time plus confusion. CT scan showed normal but what is confusing the neurosurgeon and epileptologist is the leaking brain fluid. It is coming out of his 2013 incision, NOT any of his May 2019 spots. They stitched it up, and take the stitches out tomorrow. Then in 2 weeks, he will have an EEG done for 3 days at home, to see if any of these new weird symptoms are a result from seizure activity.

July 11
Weslee has had a bit of a setback. Had a CT scan today. Seeing his surgeon  tomorrow.

July 7

This is one of the reasons that I haven't slept well since 2011, when Weslee had his first tonic clonic seizure. SUDEP.  A very real possibility of death from seizures. I still check on him several times a night, especially with all that has happened recently. // As a side note, Weslee LOVES Disney's "The Descendents" and is quite upset the passing of Cameron Boyce.  ( https://abcnews.go.com/…/disney-channel-star-cameron-boyce…/ ). // Please please help other parents sleep a little easier by donating to the Chelsea Hutchison Foundation). CHF supplies monitors and such to people who need them. Do it in your name, Weslee's name, or in Cameron's name... just do it. Today. Now.  (Please visit www.chelseahutchisonfoundation.org  to donate.)

 July 5Today was Weslee's first appointment with a specialist opthamologist.  Referred because his eyes aren't tracking correctly and because he has tunnel vision. Doc did a thorough exam and recommends he try special prisms in his new glasses, then take a wait and see.  He was already partially blind from his first epilepsy surgery in 2013, and thankfully he's no more blind now. Hope to pick up his glasses by the end of the month.  There's another problem, though. His head is still so swollen. We've order a headband instead of ear-pieces but it may not be enough for him to comfortably wear glasses.

 

Weslee - Epilepsy - June Update

June 26
Weslee is having a bad week. The little seizures started back again. Plus he is hearing all voices like they are computers or synthesized. And today, after pool physical therapy, five minutes before we stepped out of the house to go to the Visitation for a wonderful woman from my past, Weslee took the wrong pills..nighttime (including sleeping pill) instead of his after-lunch pills. I barely got him out of the funeral home before he started stumbling. .. .. And it's only Wednesday.

June 18
Had to search for a new PCP for Weslee.  The one we've been using barely looked at Weslee a few days after we got home, and pronounced him (basically) a baby for complaining about headaches.  Jerk.  So today we met with his new PCP.  So nice, and is helping Weslee's neuro-team to try to get his pain under control.

BTW, he has had a few of what we call "almost seizures" ... simple partials or auras that feel like they will turn into a tonic clonic.  Before the May surgery, he had these AS several times a day but SINCE his May surgery, he's had about 6 of them.  Total.  And no other kind of seizure.

Weslee's neuro-team thinks that the one good thing that came out of the SEEG surgery is that one of those probes must have hit the focal point - where the seizures start, and must have done something to either stop or at least mostly eliminate them.  Here's hoping!

June 14
Met with Weslee's neuro-surgeon today, as kind of a checkup.  Looks like is healing well, at least externally.  He does still have massive headaches, and groin pain.  Not sure I mentioned that before.  The groin/abdomen pain started in the hospital, the day after Weslee's shunt surgery.  CT scans and ultrasounds show that the shunt tubing is exactly where it is supposed to be, and that other than a ton of gas, the cause of the intense pain is unknown.

June 10
Met with the outpatient rehab center.  They had access to the notes from the inpatient center, so as they evaluated Weslee's progress, all were quite pleased.  One problem though.  The OT person notices that Weslee's eyes aren't tracking, and he has double vision.  Weslee says he's had those problems for a while, but since Weslee has a lot of problems understanding time, and his neuro-pathways are messed up, AND since he never mentioned these problems to me, I am taking that with a grain of sale.  Anyway, they are suspending any plans for rehab until after he's been evaluated by a special opthamologist. We will, however, start going to the local YMCA for pool therapy.

June 4
Weslee is finally home, after 35 days and 6 (7? 8?) surgeries. Sound asleep on the pullout loveseat...his new home for at least a couple of days. So many Dr and rehab appointments already. Thinking I will go take a nap as soon as this load of laundry is done.

SEEG surgery gone wrong

Weslee's May 1 2019 SEEG surgery went really really badly.    (Reminder, it was to help us get data so we can make an informed decision as to the next step: VNS, RNS, surgery, etc.)

The surgeon marked on the head where to drill the holes through the scalp and then the skull so that he can thread probes through the holes, reaching various depths and components of the brain.  Weslee had 7 probes put in his head, then was sent to Recovery.  He had a hard time waking up, but after about an hour in Recovery, he was sent to the ICU (intensive care unit).  If not for an on-the-ball nurse (Shane) noticing that Weslee still wasn't quite waking up, and that the left side of his face was going slack, my son would be dead.

See, it's rare that SEEG probes leave a track of blood/bleeding as they go in.  But still, sometimes there might be ONE probe that will cause bleeding.  EVERY ONE of Weslee's probes bled, causing the brain to swell and preventing Weslee from waking up fully.

Shane immediately called the surgeon who, luckily, was still in the building.  He ordered a CT scan, stat, which showed the massive bleeding.

The surgeon took me aside and said "your son has an abnormal amount of bleeding in his brain.  If I don't operate immediately to release the swelling and pressure, your son WILL go into a coma and die".

I will never be able to forget the look on his face, and the urgent sincerity in his voice, and his terrifying words..

Needless to say, I gave him permission to do the follow up surgery.

Long story short (I know, too late!), he had a stroke from all of the brain bleeding. He had a breathing tube for almost 2 weeks, two brain drains (temporary shunts, one on each side of his brain), and a total of 7 surgeries in 16 days. After getting a permanent shunt on day 16, he was moved to the epilepsy ward on day 17, and less than a week later, moved to an inpatient rehab facility.  He had to work hard so that his left side functioned again. 

We didn't get any information/data from the SEEG.  It would have been corrupted because of the brain bleeding and swelling.  The probes were taken out shortly before he got the permanent shunt.

He goes home tomorrow. The plan is to get evaluated from an out-patient rehab facility, and to continue his physical therapy, occupational therapy, and speech therapy.  He also needs new glasses because his eyes aren't tracking together, and he has double vision. The local YMCA is allowing Weslee several free months to use the pool for his physical therapy.

We never did get a 100% definitive answer as to what caused the bleeding.  The general consensus among the 5-10 doctors he saw every day was that one of his seizure medications caused it. One of those super-rare side effects.

Ask me if I'd do it again, knowing what I now know.

No. I'd rather have him on medications for the rest of his life.  Weslee has a long road to recovery. 

Who we are

Weslee goes into the hospital tomorrow for a SEEG surgery.  What is it?

Stereoelectroencephalography (SEEG) is an invasive surgical procedure that is used to identify areas of the brain where epileptic seizures originate. During SEEG, doctors place electrodes in targeted brain areas, which are then monitored to precisely locate the seizure source.  (Source: https://my.clevelandclinic.org/health/diagnostics/17457-seeg-test)

A little background: started in 2006, 2007 ... somewhere around there, my son Weslee started having a lot of deja vu episodes.  Like... a LOT!  I began to mention it to his doctors, but they all brushed it off as nothing.  It wasn't until March 2011 when he had his first Tonic Clonic (grand mal) seizure that people started taking me seriously.   Oh, and the deja vu episodes were really simple partial seizures. 

Soon after his first Tonic Clonic, he developed two more kinds of seizures, for a total of four. Not a day went by that he did NOT have a seizure. Even going to a restaurant or to the library would bring them on.

After trying many different kinds of medications, several tests, EEGs done at the local Children's Hospital, it was decided to try surgery.  He did well with the two-step surgery, reducing his seizures greatly.

He could live his life again, but when I (his mom) was diagnosed with breast cancer in 2016, Weslee's seizures returned, hard and fast. Stress about the possibility of losing me did that.  I moved Weslee and I away from Colorado in 2017, back to where I grew up, in Louisville, KY, leaving my husband behind.  (I needed us to be nearer to people who actually cared about us. My husband of ten years couldn't and wouldn't.)

We found a new epileptologist (neurologist that specializes in epilepsy and seizures), and ran more tests ... EEG in EMU, 3T-MRI, etc. We brought in a neuro-surgeon, and as a group, with input from other doctors, decided to do this SEEG surgery.

That brings us to today.

Weslee's not really nervous but I am. I vividly remember his previous brain surgeries, and even though this one is supposed to be less invasive than the two-step he had done in 2013, there are still risks.  But ... I make myself put on a great and calm face.

This blog will hopefully keep a record of how the surgery goes, and life with epilepsy.

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(For more in-depth details about our story, please read my book, "Epilepsy - One Mother's Perspective".)

Kindle / e-book version: https://www.amazon.com/dp/B07PWGR8M8

Paperback: https://www.amazon.com/dp/1885615221