11/15/2024
Today was our ALS clinic with Dr Hollinger. Additionally, he performed Jacob's Botox injection. He seemed concerned that Jacob may be depressed. I'm sure, to some extent, this is true, but currently, the big issue is the frustration from not being able to communicate. I truly believe, once his eyes are working and he can use his device, he will be right back to normal. Dr Hollinger seemed to agree with this assessment and asked me to just keep an eye on him.
11/06/2024
We had our third call with Bridging Voice. Was to follow up with our osu visit. They are very excited about our decision to move forward with the scleral lenses and we'll have another call with us once Jacob receives his lenses and is wearing them.
On a separate note, we also had the opportunity to meet Gary and Carol Godfrey, via zoom. Gary is also an ALS patient and scleral lens wearer. Bridging Voice connected us with these wonderful people and they have instilled so much hope and excitement for what these lenses can and will do for Jacob.
11/05/2024
It has been 90 days since Jacob's last trach change. I elected to do it today with the help of Mike Walker. Following Dr. DeSilva's advice, I "flushed" the trach prior to making the change.
The flush consists of deflating the inner cuff, while suctioning. Then reinflating the cuff and stop. Repeat this procedure three times. Doing this allows any excess buildup of drainage to run towards the lungs, while suctioning it back out. The whole point of this procedure is to keep Jacob from getting sick. Every time we've done this change, he has had a slight fever, with body aches and chills. He would be lethargic for a couple of days after every tracheostomy change.
Unfortunately, Dr. DeSilva's procedure did not work this time! This change was extremely difficult for Jacob. He was sick throughout the next few days. This could be because he had COVID with this particular device, or 90 days could simply be too long to wait. The manufacturer recommends 30 days, so I think we will try that the next few times and see if he does better.
11/04/2024
I scheduled us an appointment with Dr Stephanie Pisano of the Ohio State University. Dr Pisano and her staff were quickly able to diagnose Jacob with dry eye syndrome. They test fitted a generic set of lenses on Jacob to see if he could tolerate them. It was perfect. He could see, his eyes were open and he tolerated the lenses just fine.
With that, the order was placed and we will return on November 26th for training and fitting of Jacob's new lenses.
