Apr 25: Little Junk Journals

My son Weslee is 28 going on 12.  He is autistic, with OCD, ADHD, intractable epilepsy, and side effects from brain surgeries, like partial blindness and a stroke/coma in 2019.

He takes four seizure meds, plus two rescue meds for when seizures get real bad.  He has a VNS that doesnt help him at all.

This sweet gentle young man morphs into a despondent person about once a week. In the hopes for some answers, we traveled from KY to the Cleveland Clinic Aug/Sept 2024, and was observed by a new team of doctors. They recommend another SEEG. At least one surgery but possibly 3 to 4.

As a stress reliever, I craft.  Making things with cement, Plaster of Paris, resin, paper and more, painting too, PLUS I really need to get back to writing. My epilepsy series calls out to me daily, to finish it.

Ok! Ok!  I hear you!!

I am working on making things to sell, to raise money to get us there and back, three round trips per one surgery.  Please visit my etsy shop and/or check out my gofundme fundraiser.

Thank you so much. Vikki

.....

Please help with Weslee's medical and related expenses, then share the link(s) everywhere. Check out the GoFundMe ... https://www.gofundme.com/f/r8wuy7-help-weslee-and-family-with-medical-expenses

Here is the GoFundMe tiny URL: https://tinyurl.com/bdccbkpj

...OR...

If donatìng through PayPal is easier... Click here.  

Thank you.

Vid Was An Oopsie

I didn't realize the videos I posted last night on YouTube had cut off my kid's head!  Here I kinda try to explain (hopefully the vid will show up ok ... or at all!)

Better pic of a stationery set, still in progress.

Guardianship vs POA

POA = Power Of Attorney

In September, when I spoke with Weslee's 'case manager' (main doctor contact) at the Cleveland Clinic about the results of his week-long stay in their EMU (epilepsy monitoring unit), I came away with more questions.

It all boils down to: what is our next step.  Stick with what we are already doing, with meds and prayers, or (now, here is the tricky part), have another brain surgery (his 13th? 14th?)  Not just any surgery.  A 'SEEG'. This is the surgery (May 1 2019) that gave him a stroke, put him in a coma, and caused a whole lot of problems. The SEEG will give more in depth details about exactly where his seizures start, migrate to, and end...for each kind of seizure. To do that, once the electrodes are implanted directly into his brain, they will do lots of things to make him seize.

As a mom, I really REALLY hate watching that. He doesn't breathe, so turns blue sometimes. He loses control of his body... falling if not on a safe place, like a bed. And other things.

And chances are, another 1 to 3 surgeries will need to follow the SEEG, depending on what they find. Each surgery will require 2 to 3 visits (or stays) in the Clinic.

I asked the doc what he would do, expecting him to give a non-answer like doctors usually do.

Surgery. He said surgery/surgeries. Okay.... once I recovered my wits, he continued with a quick list, including getting guardianship ASAP.

Skipping ahead to ...

A few weeks ago, I finally met with a lawyer who specializes in guardianship cases.  I took a copy of the POA that I had drawn up a few years ago.  Once she read it, she told me that it was so thorough, we didn't need guardianship papers.  Just file the POA with the courts. And she didn't charge me for the consult.

An honest lawyer. Color me amazed.

Meanwhile, this can be marked off of my list.

BTW, Weslee and I decided to go ahead with the surgery, which I will schedule as soon as I can get my vehicle working good enough for the long drives.

Approx 30 days after his 5/1/2019 stroke, I wheeled him to the cafeteria for a change of scenery and to practice feeding himself (incentive: pecan pie). Notice the very crooked smile.

Back At It

So so far behind in blogging. I will catch up ... little by little. Promise!

WESLEE AND SEIZURES

It has been a week at least since I've had a decent night of sleep. Insomnia, listening for seizures, Weslee's nightly sleep-talking, and all that jazz. So I was still somewhat awake yesterday morning when I heard him have a seizure. He hasn't had one of his bigger ones in a while, so I had almost began to breathe again. But yesterday was rough. That new seizure that he's been having? The wiggle worm? It appears instead of laying down to wiggle, he now does it sitting up too. Promise that it was incredibly weird to watch.. over and over and over.  Every couple of minutes. Wonder what the progression means.

It took an extra dose of one of his seizure meds PLUS his rescue nasal spray, to calm the seizures.

They started back up in the late afternoon so we did yet another rescue dose.

What is it about weekends and his increased seizure activity?

ME, THAT PURPLE MOM

It just occurred to me that I have worn purple nonstop, every single day, for the last 12 and 1/2 years. Whew! That's a lot of purple!

I hope that at least some of the conversations I've had that began because of my constant purple have succeeded in spreading awareness about epilepsy, SUDEP, and the sneakiness of seizures.

That IS the purpose of this website and my constant purple-wearing. To spread awareness.

WESLEE AND SURGERY PLANS

Weslee's inpatient stay at the Cleveland Clinic last year gave us a lot of information. These wiggle worm seizures, the little deja vu bits, and some other things we weren't sure were actually seizures ... ARE in fact seizures. They definitely showed up on the EEG he was hooked up to.

His medical team at the Cleveland Clinic reviewed all the data, from MRIs, EEGs, CAT scans and so forth, prompting a call from his Cleveland Clinic case manager, a doctor who had been there for quite a number of years. He suggested that there were a few options  to go forward.  Unfortunately, all but one required surgery. The one that did not include surgery, was basically the option where we do nothing. Just keep on keeping on.

I asked a lot of questions, came up with more questions for the case manager, got some decent answers, and hung up. It has been a few months since that talk, but the stress ways heavily on my shoulders. Do I send him back for surgery, or do we do nothing. And that first surgery that he would need to have, is the SEEG, which would be a repeat of the exact same surgery from May 1st 2019, that gave Weslee a stroke and put him moments away from death. 

The stress of making this choice, as to what path we take, has overwhelmed me. I only recently made the decision that we go ahead with the surgery. The SEEG will give us more detailed information, if done correctly, as to where exactly his seizures begin, work through, and end.

Or they could do what **I** call a blind surgery, where they take the limited info from the Aug/Sept EEG in-patient and operate where their best guess indicates.

No matter which surgery, it will be a minimum of three physical visits there. My van won't make it again.

As soon I fix or replace my vehicle, I will contact the case worker to set up the next step(s). 

ME... 

The stress of figuring out the best choice for Weslee's health, coupled with my severe health issues, lack of funds, and so many more other aspects of life, I am not doing great. You probably don't want details.  So I have been painting and marbling and experimenting with art, plus writing, when I am up in the middle of the night, as a way to relieve stress. I have high hopes. Well, not really.

Dot painting / Mandala. Need to fix a few places. Will have a black background instead of purple. Possible bookmark? Is there a market for this?

. . . .

Until next time...

Vikki, ThatPurpleMom.com

We are home!

ORIGINALLY TYPED SUNDAY, SEPTEMBER 5 2024 at 11:48 a.m.  

To continue ...

We were still at the Cleveland Clinic, waiting for the last test and procedure so Weslee could be discharged.

He finally went for an MRI in the middle of the night and they also did the X-ray at the same time and then they brought him back to the room and he went back to sleep. After breakfast and pills in the morning, they turned his VNS back on. Wow! The VNS probably was working after all because seizures were more prevalent with it off. But since he had been without the VNS for almost a week, they had to start him back on a low level. They didn't even get close to where he was when they turned it off the first day. It was too painful, we're going to do it a little by little. 

On Sunday, Weslee was discharged. We got in the car and headed for home by 11:00 or so.

We started driving from Cleveland Ohio, our destination being Louisville Kentucky. We got about 40 minutes away from home when the car suddenly stopped.

To make a long story short, we had to get it towed from way out in the boonies to my apartment which cost a buttload of money. Then on Tuesday (Monday was a holiday) I called my mechanic and they got it towed to them. They worked on it and I got it back 2 days later. Don't even ask me how much it cost, because I had to sell some things to pay for the repairs.

Bruises, VNS, and Home

Weslee isnt usually a hard stick but here we are, 5+ days after admission, with bruises and a blown artery. The other arm isnt bruised but is still pretty messed up.

Since we got the seizure activity we wanted/needed, he is back on his meds. Only thing left to do is the last MRI and an X-Ray, which cant be done until the MRI machine is available, then turn the VNS back on. So because we are still waiting today, we will be discharged tomorrow. 

I miss my bed. And microwave. And shower. and quiet. And really need to work on my books, and get ready for 2024 craft fairs.

We are soooo ready.

HOWEVER, I am actually sleeping here. Must be because the nursing staff and the EEG techs will make sure W doesnt expire from SUDEP.

www.ThatPurpleMom.com

Food Service in a Hospital

I don't get it. A world renowned medical facility, the Cleveland Clinic, cant get his freakin mother-trucking 4ss-toting food tray correct!  He was admitted Monday.  Total of 13 trays thus far, and TWO have been correct...both breakfasts. 

On his first full day here, I hand-wrote his meal options. One breakfast (same every time) and 6 lunch and/or dinner options, complete with desserts and drinks. Four food service people have taken a pic of it. Easy peasy, right?

Today for lunch, they tried to give him broth, hot tea and 2 slices of plain white bread?  Huh?! Then they found the 'correct' tray but instead of providing a cheese quesadilla, he got chicken. Again.

He wont eat it. Super picky eater.  Luckily he is napping, so i left a message with food service. Hoping they can get the corrected entree to him before he wakes up.

Back to my orig question/statement: why cant they get it right?!?! Seriously?

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The thing is that, in our experience, very few hospitals get the trays correct more than 50%, especially as an adult patient.

Why?

Waiting for 1 more test

Weslee had a ton of seizures yesterday, including for the radioactive SPECT test; the Cleveland Clinic got most of the data they need. So... one more test (MRI) .. can't get MEG because of his programmable shunt. They will start to get him stabilized before we go home.

Look at the view from his hosp room (see the messages someone wrote?). They are building a new epilepsy unit.

Caught The Seizures Needed

Weslee had been awake this morning for less than 3 minutes when he had a tonic clonic (grand mal) seizure. The nurses weren't quite ready yet but he had another within a couple minutes of her being ready.  We noticed it at the exact same second: her watching the EEG screen and me watching Weslee's face. The nurse immediately grabbed the syringe and injected the radioactive dye, while keeping a running verbal commentary for the EEG techs and vid/audio.

Now that he is injected and awaiting his 2:00 SPECT scan, he let himself fall asleep.

What a cutie, right?!

The Pretzel Seizure

Luckily I have video of this weird seizure Weslee started having mid-June. Just about all of Weslee's doctors, nurses and EEG techs have asked to see it. None of them have seen anything like it.

See why I call it the pretzel? Look where his right foot is pointing, then look at his face!

Testing!

Weslee and I left Louisville early on Sunday, heading to Cleveland Ohio for our appointment at the Cleveland Clinic on Monday, August 26th. It took us 7 and 1/2 hours, to drive 5 hours, because of way too many instances of road work. 

By the time we finally got to our hotel for the night, we were tired, hot, sweaty, and in horrible moods. We chilled, order Doordash, and they got lost. We eventually got our food, ate and went to bed.

Monday morning we headed to the Cleveland Clinic, where I got lost. So much fun! We finally made it, parked with the valet, and we're only 15 minutes late for the appointment. So glad they wanted us to come in early!

Spent an hour and a half with the admitting physician, then we were immediately led to Weslee's room. It's kind of okay, somewhat comfortable, except they didn't have an actual couch/bed for me. They had a chair that pulls out into the most uncomfortable chair bed I have ever been on. Don't even ask me how bad my back is! 

Anyhoo, they started hooking Weslee up to the EEG leads, and for the next three to four hours, the room was a revolving door of nurses, EEG techs, registration, more nurses, and doctors. I'm surprised Weslee didn't have a seizure just because of all the activity!

He had an instance of a weird lurching feeling, so we pressed the red button (that alerts the people monitoring and marks the time on the vid and EEG tape.) They also noted 3 instances of seizure activity that we didnt notice. Hmmm. Interesting.

(A huge shout out to my friend Suzi for watching my place while we are gone.)

Almost Gone

It's been a madhouse, trying to get ready for Weslee's admission into the Cleveland Clinic. Not only making sure my mini van will get us there and back, but also that we have a decent hotel room for that first night, doing all of the pre-admission paperwork, med list and instructions before we even see anybody on his admission day. 

Then of course, there's the packing. The decisions on what work I want to take (ok, taking all of my books in the hopes to finish at least one!). And the meals. It's just so much. 

But I did just find out yesterday, that despite being told we will have a microwave and refrigerator in the room, we won't. If I want to use a microwave or fridge, there's one in a special room by the nurses desk, I think. 

So I had to figure out alternatives because I need to be with Weslee so that I can push the button every time he has a seizure. Can't be running down to that room for another bottle of cold water, or a soda for W. So, of course, that meant changing what I had planned to eat that week.  (I now understand now that Cleveland Clinic is a low sugar low fat facility, so Weslee will not be able to get any snacks.)

Today we went and got all of our hair chopped off. Weslee is completely bald, again, because it makes it easier for the electrodes to be glued to his head. And I cut my waist length hair to almost a pixie cut. It's been many many many years since I have had short hair, but I'm tired of fussing with it. And I'm getting so very old, that long hair just doesn't suit me anymore. (This short cut revealed so much gray... geez, I am old.)

Anyway, a couple more days and we will be gone.

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Note: I did this painting the other day for my blue ephemera book. W said he likes it. Ok. Unusual.

Freak Out

Weslee just came up to me, freaking out. Sobbing. He is super nervous about the Cleveland Clinic visit and is convinced he is going to die there. Surrounded by gawkers and fluorescent lights. Away from home.

I tried to reassure him... that it is just another EMU visit, but at a different hospital with a different team of doctors and only one test he hasn't had before. And a fervent hope for answers.

If you can help get us there and back, please click here. Thank you.

Arranging Travel Plans Sucks!

I've written all over this blog about Weslee's seizures, how we can't seem to get a handle on them, despite many tests, different medicines (even CBD oil), surgeries, special diets, a VNS implant and much much more.

He is 27, going on 13, dealing with not only the constant seizures, but also autism, OCD, ADHD, partial blindness, Swiss-cheese memory, limp (from stroke), shunt in brain (also from stroke), etc.

He is becoming despondent. So, I 'encouraged' his medical team to recommend us getting another opinion. They referred us to the Cleveland Clinic, about 6 hours' drive from here. It is coming up soon.

This is how I have spent the last several business days.... trying to get Weslee and I to the Clinic for his seizure consult.

Let's see... what have I arranged thus far.

• CAR: The repair of my brakes will cost close to $3,000, and they won't put a 'band-aid' on them. Rental may be almost as much, especially since I don't know exactly how long we will need it (8-10+ days).
• GAS: My sister's sister-in-law is promising a gas card with a little gas money loaded on it.
• HOTEL: Hopefully only need it that first night, then I will sleep on the couch in his room, once he is admitted. Weslee will, of course, have his hospital bed that he will pretty much be confined to.
• MEALS: His are covered once he is admitted. Mine won't be at all. Microwave and tiny fridge will be in his room so for me: (1) frequent trips to grocery, (2) bring shelf stable from home, (4) cafeteria, (4) Doordash, or (5) combination of all. Maybe just a bunch of boring protein drinks since I am really overweight. But I eat when stressed. Nevermind.
• BORROW VAN CAMPER: (For trip up and back, and instead of hotel). My feelers haven't found anything to borrow, and can't rent.

So basically, NO arrangements are made.

I am tired, frustrated and feel like I'm falling into a depression. I can't seem to make his life better, or find answers. 

And I don't want to cancel his appointment just because I don't have nearly enough donated or in my bank (from my father's estate). The TRUMP puzzle book I have been working on might not be ready in time to help out, and I can't spare the time to work on other projects.

I am open to suggestions.

If you can help, please click here. Thank you.

Help Weslee .. Become a Warrior

Weslee's seizures have become too difficult to handle. As a last-ditch effort, we have scheduled a medical consult with the Cleveland Clinic in Ohio next month.

We need help...transport, hotel, gas, meals and incidentals. Tests should take anywhere from 7 days to ... who knows!  Hoping he doesn't have another stroke/coma; it took about 6 weeks to bring him home the last time.

Become his warrior. Give him his life back.  Please donate.

paypal.me/VIKKIWESLEELAWRENCE

Thank you.

Could There Be Link?

Tonight I was passing time, watching YouTube videos while I listened for seizures coming from my son's room. Weslee has been having a lot lately. The video topics ranged from art techniques, crafting with cement, music, travel, etc. My interests are varied.

Up popped a 'short' about Mark Twain's daughter Jean, and how she had seizures. I shot straight up and hunted for the full video. Found it. At time code 27:06, the story began, with more details.

Why was this important to me? Mark Twain, aka Samuel Clemens, was my 5x-Great-Uncle on my maternal side. My grandmother's maiden name was Clemens. From the vid, after consulting specialists all over the place, the consensus was (1) unknown cause or trigger, (2) keep Jean calm, and (3) the seizures were probably hereditary [genetic] so no cure.

What?!?! Genetic? My son may have gotten this from my mother's family?  We (1) don't know the cause or triggers of my son's seizures, (2) keeping him calm DOES help, and (3) ... well, that is still TBD.  Weslee's consultation with the Cleveland Clinic seems so far away but they are our last hope for answers.

I can hardly wait until Monday morning to contact his regular epileptopogist here in Louisville with this possible genetic theory. Who knows... we might get lucky.

Video link follows. Go to time: 27:06 for the relevant info.

https://youtu.be/4wfYTCUJSIU?si=5hRJ1_6gJhdNGmcV 

Note: if the above link doesn't work, please let me know.

#ClevelandClinic

Help Weslee Get His Life Back: 

paypal.me/VIKKIWESLEELAWRENCE

C.C. Appt Changed

I had to call the Cleveland Clinic this week to push Weslee's appointment back a bit. Haven't even raised a dime of what we need.

Hoping to get in to a craft fair and/or flea market in the next few weeks or so. Making lots of junk journal starters and kits, bookmarks, wall art, shot glass pots, etc, plus I have copies of books I have published.

Hope hope hope!

Help Weslee Get His Life Back: 

paypal.me/VIKKIWESLEELAWRENCE

Appointment with Epilepsy Specialist

(Link Repaired)

My son, Weslee, is 27 years old, going on 12. We have autism, OCD, and uncontrolled epilepsy to thank for that.

If you follow me on any social media, you may know that Weslee's seizures haven't gotten any better, despite brain surgeries, medications, therapies, diets and the latest, a VNS device implanted. He has a lot of break-through seizures of different varieties, and all with no forewarning.

It's gotten to where he has a "safe place": his bed.  He feels (as do I) that if he is already in bed when he has a seizure, he won't fall down the stairs (again), or back into a door and put a hole in a wall (again) or hit the edge of the bathtub on his way down (again again and again).

Weslee in Emerg Dept after a seizure knocked him against the bathtub and floor. Nose broken. 

Weslee's local epilepsy doctor and team (he's had 3 or 4) have run out of suggestions, so they have recommended him to the Cleveland Clinic. He has an appointment there next month, but we need help getting there.

• My car won't make it there (no brakes, engine messed up). I will need to rent, get mine fixed (estimated to be over $5,000) or get a "new" vehicle (see below ps).
• Gas for vehicle.
• Hotel for first few nights for us both, then just for me if I can't stay in his room.
• Meals for us both, until he is admitted to a room, then just my meals.
• Hot spot because we will need a secure internet service, and I don't trust hospitals.
• Other incidentals, like getting him a new movie to watch, or anything else I need to get to keep him busy during his EMU (epilepsy monitoring unit) stay. 

So what do you say. Can you help us?

Help Weslee Get His Life Back: 

paypal.me/VIKKIWESLEELAWRENCE

Thanks.

p.s. Weslee and I are losing faith and find it hard to believe that we can't even mitigate some of his seizures. He is tired of all the medications. Of keeping an eye on the clock to take them at the right time. Of being afraid to walk down the stairs if I'm not around. Of falling and hitting his head or breaking his nose...again.  

He wants to get in a van and just start driving. To meet people he has talked to online. To take a "safe place" with him ... in the form of a special-built camper van.  Believe me... this is WAY down the line as we have to get through the Cleveland Clinic tests and so forth first.