Monday, July 31, 2023

07/31/2023 NIGHTMARE FUEL

 07/31/2023

Monday - Around 2 PM today, Jacob had to go to the restroom. I disconnected his respirator and moved it with him to his shower chair. After he had finished, I cleaned him up and returned him to his recliner. As I moved his respirator back to his side table, I noticed a visitor, Deb Winters, pulling into our driveway. In my haste, I neglected to plug his respirator back in, leaving it on battery power. 

Later that evening, Jacob decided he wanted to take a drive. Mom grabbed the Astral respirator, and assumed I had just unplugged it. We made it approximately 20 miles from home before the battery warning started beeping. I turned around immediately, jumped on the interstate and drove 80 to 90 mph all the way down I64 to get home. A tractor trailer exited the St Albans exit in front of me, so this forced me to take the next exit, which ended up being much better for us anyway. As we exited the interstate, the battery finally quit, and the respirator shut off completely.

Mom was calmly rubbing Jacob's chest and trying to keep him relaxed and taking very slow, shallow breaths, but approximately 6 miles from home, he lost consciousness. I continued my 80 to 90 mph speed across Route 34 and into the town of Winfield! Mom what is performing CPR. I was blowing the horn and flashing the lights and weaving in and out of traffic as I dialed 911! Jacob was dying, and nothing we did could stop it! My 911 call put the Winfield volunteer fire Department first responders at our home just moments after we arrived! Mom had already ran in the house to grab his charger as both of us continued doing CPR! When the first responders arrived, they immediately swarmed Jacob and worked for 30 to 40 minutes, trying to save his life!

Finally, Jacob began to regain consciousness. They took him by ambulance to CAMC Teays, where Jacob receive numerous tests, scans, and IVs. We return home early Tuesday morning and, praise.Jesus, all is well!

Shortly after this event, we were showered with gifts of car power inverters, home battery backups, and additional charging cables. 

This event was a combination of multiple mistakes made throughout the day. It was a valuable lesson learned, one that... unfortunately poor Jacob got the worst of, but a valuable lesson just the same.

We now have multiple battery backups, even a whole home generator, to ensure this never happens again.

Monday, July 24, 2023

07/24/2023 New Leg Movement

 07/24/2023

Legs stopped hurting Friday night. Today… We have new leg movement! Swinging his legs back-and-forth in his shower chair! Video available on Facebook below!

https://fb.watch/pyLAJk3Gmj/











Saturday, July 22, 2023

07/22/2023 Legs Hurt

07/22/2023

Every lumbar puncture, except one, has resulted in leg pain. Treatment number 6 resulted in a headache, but every other treatment has been leg pain. This one is no exception. Jacob's legs ached for three days following this lumbar puncture. Finally subsided on Friday night.



Tuesday, July 18, 2023

07/18/2023 Follow Up

 07/18/2023

Jacob's follow-up was perfect. Dr. Kolb took a voluntary skin sample from Jacob for an additional study. Biorepository and Brain Bank Study.

The idea is to grow the skin cells from an ALS patient and use that on laboratory specimens to help find a cure!



Sunday, July 16, 2023

07/16/2023 #7 ION363 Dose.

 07/16/2023

Back to Ohio State University! 

In phase 1, there was a one in  three chance that Jacob was receiving a placebo. In phase 2, the placebo possibility is completely removed, leaving only the actual medication from here on out!

Dosing is scheduled for Monday 7/17... everything went perfect! Jacob's hydration is great. We are due back tomorrow, 7/18 for follow up.