OCT 11: Glioblastoma Tumor

I was going through some papers that I hadn't looked at fir a while, including , my first bare-bones seizure tracker.

It gave details about the very beginning of Weslee's seizure journey, and his first surgeries.

First recognizable seizure (will discuss SIMPLE PARTIAL - DE JA VU seizures another time) was a tonic clonic (grand mal) that happened March of 2010. After quite a few tonic clonics/drops/and absense, EMU stays, and experimenting with meds, we decided to do surgery.

This is when Make-a-Wish gifted him a giant tv.  We weren't sure of his outcome.

2013: A 'WADA' test was performed to determine where his speech was... ... a highly invasive surgery. I began to prepare for the possibility of blindness, inability to talk or walk, and other side effects.

They did a Two-Step surgery in 2013. I did NOT expect a diagnosis of a brain tumor called a 'glioblastoma'. (Fatal and aggressive, but not. Confused.). He survived but not without lifelong consequences.

• Walks with a limp.
• Picked up a stutter.
• Partially blind in both eyes.
• Memory has more holes than a pasta strainer.
•  ... ... Seizure-free (kinda) by Jan 2014 until my breast cancer diagnosis May 2016. Stress, we think. Now nothing at all helps the seizures to disappear. Everything we try seems to make it worse.

Most of this is in my book 'Epilepsy: One Mother's Perspective' plus a whole lot more.

Note: Weslee has had multiple seizures every night for the last 3 nites. We are both sooo over this!!

Vikki

........

Weslee needs more brain surgeries for his seizures.  To help, please like, follow and share... PLUS .. please go to his Medical GoFundMe or to our Paypal ... AND please visit my etsy shop at www.etsy.com/shop/VikkiLawrenceShop .. 

For Weslee's regular and daily needs, please visit: Weslee Lawrence's Needs (WalMart) List.  Thank you.

Too Many Seizures

...had 6 seizures in 55 minutes, then nearly 20 minutes of nothing, then just now...a TC (tonic clonic). Somehow cut his hand in the first 10 seconds of that TC.

I hope to hell he is done for the night. He has had a rough evening.

EMU Stay Commences

Weslee is all checked in at the emu ward in a local hospital. He has been in this one before, and they are pretty good. Slid through registration, got his "fall warning" plastic bracelet, then up to the room.  

A flurry of activity ensued. One nurse to take a history and list of current meds. Another to get him settled in the bed with a hospital gown on.  (He could just wear a button-down shirt but prefers the gown as they are easier to change.) One nurse started the IV, which is necessary to give him seizure meds during the more nasty ones. I usually participate in all of the conversations.  Multi-task-hearing-conversing seems to be a requirement.

Side note: Part of his autism thing: He is convinced a freckle in his inner elbow popped up a few years ago because of so many IVs in the same place, so that's where he wants all future IVs. AND....the tape that comes with IV makes him itch so he has a lot to tell the nurse about that, and gives out options that some nurses are kind enough to at least pretend they will consider.

Once all of those were done, an EEG tech comes in with all of the wires/leads, stinky glue and other supplies.  It takes about an hour to attach them all at the proper places, and check to make sure all are correct and working. I require the room door to stay open as otherwise, I will pass out from the glue fumes.

So...

Two seizures in the last two hours...and this is with him still on all meds. Hosp/Dr. will withhold meds tonight and tomorrow morning in the hopes to get a TC (tonic clonic).

They already have enough data to show that while he has always only had seizure activity on the right side of the brain, the EEG now shows significant activity on the left.

Video of TC aftermath

Weslee had a TC (tonic clonic/grand mal) seizure earlier today. Here is a vid of him after, captured to show his slurred speech.

(Let me know if the vid messes up. Thanks.)

W's nose is doing better

Weslee is looking better. His nose swelling is going down and the gash, although still slightly leaking, is healing. His body still hurts.

Meeting with his epileptologist's office in a few hours. Going to discuss a change of meds, treatment options, and/or testings.

BTW...we are both coughing. Will get a CoVid test later this week.

ER says broken nose from TC

Broken nose. Has a sliver that splintered off. Can't do anything until nose heals and swelling goes down. He is 'terrified' about it. No stitches; just steri-strips.

Back home and sleeping. Promised to order in food after he sleeps a good chunk. Might as well, since we have both been exposed to CoVid, and are now quarantining.

Last post for a while. Going to sleep too!!

Still at ER for nasty TC

Finally taken back to be examined at 7:15 a.m.!! Yes, over 9 hours in the waiting room. Damn pandemic.

Nose still bleeding but nurse says prob no stitches. Drawing blood now.

We are sooo tired and just want our beds. I still have all of that blood to clean up.

Ugh.

Bad TC tonight so we are at Emergency

Sitting in the emergency room. Weslee had a tonic clonic (grand mal) seizure tonight...at 9:49 ... for four minutes. Was in the bathroom and fell against the door so I couldn't get to him. Banged face on floor (we think ... he doesn't remember) so I have lots of blood to clean up when we get home. His nose will probably need stitches. Blood in hair; not sure if there is a cut or if it is residual.

Post ictal phase lasted almost an hour. He is still slurring. He has had another six seizures (diff kinds) since we got here.

Hope they take us back soon. Been here almost three hours. Full waiting room and many people are coughing. Prob CoVid.