07/02/2025 Tracheostomy Change

07/02/2025

It has been 80 days since Jacob's last trach change. The plan was to go to OSU and see Dr Desilva for this change, But we have learned that our friend, Jeremy Cobb, has extensive experience in dealing with tracheostomies and has volunteered to come and do this change for us.

We elected to do it today with the help of Jeremy and Mark Toole. This change was the best yet! I believe part of the problem has been anxiety for Jacob. H
e was completely at ease for this change and everything went fantastic. Even after the fact, his peak inspiratory pressure stayed down and we experienced no issues whatsoever.

06/10/2025 PEG TUBE TROUBLE

 06/10/2025

Jacob's feeding tube pulled out this morning. His shirt was covered in blood. I deflated the balloon as flat as possible and reinsterted the tube. This bought us time to get to the hospital. 

The radiology department replaced it with a more streamlined Mic-Key button. We love this new design! So much easier for Jacob and us.

05/12/2025 TREATMENT #16 ION363 PHASE III #1 (#10 in Phase 2)

 05/12/2025

Treatment #16! Everything went well, blood work was good, although we ended up going down to the lab to have his blood drawn once again. 

Doctor Kolb once again expressed concern about jacob's communication, responsiveness and alertness.The treatment was perfect, as always!

And as with almost every injection, he had leg pain again, which would persist through the 16th (Friday).

05/02/2025 AXON-R

 05/02/2025

We had a Teams call with Cole Heiner from Cognixion today. The call was to determine if Jacob would be a good candidate for the clinical trial of the AXON-R (Augmented Reality) headset for communication. The call was a complete success and Jacob has been selected. Someone from the California or Canada offices of Cognixion will be bringing to us here in WV in the next 2 weeks! 

04/21/2025 Tens Unit = Finger Movement

 04/21/2025

Today, I made an interesting discovery. While using the 10s unit on Jacob's right hand I discovered he was able to move his fingers, specifically, his middle finger. The tens apparently provide the electrical current needed for Jacob to manipulate his own fingers!

04/14/2025 Tracheostomy Change

04/14/2025

It has been 65 days since Jacob's last trach change. I elected to do it today with the help of Mark Toole once again.This change was super easy, but Jacob still ended up sick. His peak inspiratory pressure (PIP), Which is normally between 17 and 19, shot up to the mid 20s again. It stayed this way for a few days. 

I think we may go to OSU and see Dr Desilva for the next change. Am concerned that Jacob Stoma has shrunk and the tracheostomy has become too large.

04/08/2025 Back on Botox

04/08/2025

Dr. Hollinger made the decision to begin the Botox injections again for Jacob. In ALS patients with saliva issues, injections of Botox into the salivary glands, reduce slobbers and improve quality of life for approximately three months before needing repeated. Since stopping this treatment, Jacob's secretions have become very difficult to manage.