02/25/2025 Jacob's 26th Birthday

 02/25/2025

Jacob is 26 today! Thank you Jesus for allowing us to have him here with us still. Jacob continues to be a blessing and source of inspiration and hope in what God can do for those who trust and believe! 

02/21/2025 Marshall ALS Clinic

 02/21/2025

Today's clinic visit went very well. Dr Hollinger connected a portable EMG machine to Jacob's foot to witness his big toe movement. Additionally, he made the decision to suspend Jacob's Botox treatments for slobbers, citing a possible side effect, which could be directly causing Jacob's droopy eyelids and dry eye issues.

02/21/2025 Foley Catheter Came Out

 02/21/2025

Since we were due back at the hospital on today for Jacob's als clinic, we made the decision to wait until then to have the tube changed. This morning, the temoorary foley Catheter also fell out! Once again, I stuck it back in the hole and put a velcro elastic wrap around Jacob's midsection to keep it secure.  

Once we were finished with Jacob's als clinic visit, we headed over to the radiology department. They quickly got us in and changed it out to the correct MIC style tube.

 

02/20/2025 Stopped Tobramycin

02/20/2025

Today ended what should be our final 28 day tobromycin regimen. We are very happy to be ending this drug. Not only is it extremely expensive (thank goodness for our insurance) but it also carries with it a ton of side effects, some of which Jacob has been experiencing.

Difficulty urinating, eye irritation, kidney issues, diarrhea, fever, muscle weakness... 

There are so many more side effects, but these are the ones Jacob has experienced.

02/19/2025 PEG Tube Issues

02/19/2025 

It had been four months since we had Jacobs feeding tube replaced. Tonight, it just fell out! It appeared as if the balloon on the end had leaked and become flat. The feeding tube stoma can close within 24 hours , so I managed to slide the tube back in the hole to ensure it stayed open. It was a lot for him to endure, but after an already long week, we imediately headed to the Cabell Huntington Hospital ER. Unfortunately, the emergency room staff did not have access to the radiology department, forcing them to put in a temporary foley catheter, until we could return during normal business hours and have it changed properly. 

02/18/2025 Final visit at the Havener Eye Institute

02/18/2025

On this 2/18 visit to Havener at OSU, Dr Pisano determined that the fourth (last) set of lenses Were perfect in doing exactly what they were designed to do. She made a couple of very small changes and ordered a 5th set, which will allow us to have two good sets for alternating.

This was our final visit for lens fitting. Have scheduled Jacob for a 6 month follow-up. I had begun using double sided eye tape to help hold Jacob's eyelids open. This also seems to be working quite well.

02/17/2025 TREATMENT #15 ION363 (#9 in Phase 2)

02/17/2025

Treatment #15! Everything went perfect, blood work was good, although we ended up going down to the lab to have his blood drawn once again. 

Doctor Kolb expressed concern about jacob's responsiveness and alertness, but quickly dismissed this as soon as he saw Jacob's movements and ability to answer questions. We understand that these specialists are looking at Jacob from a scientific viewpoint, but there is so much more at play here than those numbers! Jacob had COVID in September, and unfortunately it affected his eyes, which affected his ability to communicate with his devices. This is a complication that Dr Pisano at the Havener Eye Institute is certain will rectify itself in time. Not to mention the fact that God is still in charge!

The treatment was perfect, as always!

And as with almost every injection, he had leg pain again, which would persist through the 21st (Friday).

02/08/2025 Tracheostomy Change

 02/08/2025

It has been 35 days since Jacob's last trach change. I elected to do it today with the help of Mark Toole, once again. I again following Dr. DeSilva's advice, I "flushed" the trach 3 times prior to making the change. 

This change was super easy, and probably the best one yet, but for some reason, Jacob still ended up sick. His peak inspiratory pressure (PIP), Which is normally between 17 and 19, shot up to the mid 20s, and even got as high as 30 at one point. It stayed this way for a solid week. Our medical professionals told us that this was not a terrible pip and that we should not be concerned. Still, after over a year of that pressure being a consistent 17 to 19, it was unnerving to see it in the 20s.

We would later learn that deflating the cuff with Jacob lying down flat was the reason for the issues. Moving forward, he will need to be sitting in a more upright position, to ensure I am able to suction everything out of his trachea all the way to the carina.

01/24/2025 Begin Tobramycin

01/24/2025

Our doctor told us he will likely take Jacob off of this nebulizer treatment in March. So this time should be our final round on this drug.

01/14/2025 Control Bionics "NueroNode"

 01/14/2025

Thanks to Sarah with Marshall University, we had a meeting today with Tricia McGee from Control Bionics. She was here to introduce Jacob to the NeuroNode.

The NeuroNode is a wireless, wearable sensor that gives Jacob the ability to access his technology by bioelectric signals or spatial movements. Unlike any other sensor, the NeuroNode uses the body’s EMG signals or 3D spatial awareness to give the user control. Individuals can access their computer, phone, tablet, and more with the NeuroNode.

Tricia was able to find several spots on Jacob's body, which will work with the device. 

Sarah has already sent us the computer that accompanies the node. We are wafting for Ins approval.

01/03/2025 Tracheostomy Change

01/03/2025

It has been approximately 45 days since Jacob's last trach change. I elected to do it today with the help of Mark Toole. Once again, following Dr. DeSilva's advice, I "flushed" the trach 3 times prior to making the change. 

The flush consists of deflating the inner cuff, while suctioning. Then reinflating the cuff and stop. Repeating 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.

The plan was to change this at 30 days following the manufacturer recommendation. Due to the holidays, we elected to wait until today. The change was still very difficult. It was a struggle to get the old tracheostomy out. Even with the cuff fully deflated on the outside, the inside balloon would not go completely flat. I gave Jacob the option to have this done by the doctor from now on, but he still prefers dad to do it. As of bedtime tonight, he was still not sick, so we pray this change was successful.