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
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
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.
03/27/2025
After our trip to the emergency room, it became evident that the glycopyrrolate is not the answer for Jacob's secretions. It did not lessen the secretions, it only made them thicker and more difficult to manage.
I discussed our decision with Dr Hollinger, and he agreed and elected to restart the Botox.
03/27/2025
This evening, we left home on our way to the ER with Jacob. Barb and I used a stethoscope to listen to Jacob’s lungs, and what we heard was truly alarming. Jacob was in tears, overwhelmed with anxiety. Even at the hospital, his heart rate stayed between 145 and 150 BPM. Despite our best efforts, his labored breathing and the secretions wouldn’t ease.
During the drive, we called our pastors and close friends, asking them to join us in prayer. In the van, we prayed together as a family, surrendering the entire situation to God and setting aside our own understanding. As always, God went before us, preparing the way to ease Jacob’s suffering and renew our hope. When we reached the hospital, the doctor couldn’t hear any issues in Jacob’s lungs. The x-ray revealed only a minor infection—easily treatable with a short round of antibiotics, Levofloxacin.
03/24/2025
Dr. Hollinger agreed to start Jacob back on glycopyrrolate (Robinul) for slobbers. Things are going great, But since halting Botox, the secretions have been very difficult to control.
03/11/2025
Telehealth appointment with Dr Nusair. He made the decision to permanently stop Tobromycin.
