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.

12/30/2024 Cardiologist

 12/30/2024

Today was a follow-up visit at Dr Stanton's office, our cardiologist. We saw the PA, Ben, who fully examined Jacob including an echocardiogram. Everything appears normal, except Jacob's exaggerated heart rate.

They increased his metoprolol tartrate beta blocker to 100 milligrams twice per day. This is double the previous prescription. I will monitor Jacob's blood pressure and vitals closely for the next few weeks to ensure there are no issues with this increased dosage.

12/27/2024 STOPPED Tobramycin

12/27/2024

Today ended our next 28 day tobromycin regimen. We ended up a few days behind because we forgot the dosage when we travelled to OSU for Jacob's last ION363 treatment.

12/26/2024 NEW(EST) Scleral Lenses

 12/26/2024

On our 12/17 visit to Havener at OSU, Dr Pisano ordered a third set of lenses, due to the fact that they found a stigmatism in one of Jacob's eyes. Additionally, the left eyelid is much more droopy than the right, so the new lenses account for that as well.

These new lenses arrived today and are much more difficult to get in his eyes. This is largely due to the depth of the lens. They hold more of the eye solution than previous versions, therefore it is difficult to keep it from running out. 

They seem to be working quite well!

12/17/2024 Tongue Movement?

 12/17/2024

That's right! Mom noticed Jacob's tongue moving when she was cleaning his lips and doing a little personal hygiene for Jacob. This is incredibly huge! Couple the tongue movement with the new movement in his right leg, his right big toe, and the other small movements he seems to have gained, and it would be a clear indication that, although slowly, he is definitely improving.