06/22/2024 To Infinity and Beyond

 06/22/2024

A message with our friend in New York, Sandra Jacques, prompted us to do some research regarding Jacob's feeding and our method for feeding him. Up until this point, we had relied solely on bolus feeding, which is basically gravity feeding him through a large 60 cc syringe.

The bolus method of feeding Jacob, would leave him feeling bloated and constantly full. We began to investigate a different method, using a feeding pump*.

Option care health recommended the infinity pump, and we were able to switch Jacob to Kate Farms formula, this is an all-natural formula, which is much easier on the patient and provides much better nutrition with less preservatives and fillers.

Instead of feeding him a carton of formula in less than 10 minutes, the slightly larger carton of formula is now distributed, via the pump, over the course of an hour and a half. This is much better for Jacob and he is no longer feeling bloated and stuffed.

* As a family, we were completely against using a pump of any type. Please see November 5, 2023.

06/16/2024 Assistive Technology

 06/16/2024

Today, Barb went to Best Buy and bought a Google nest, mini, stringer lights, and a few smart plugs for the house. I was able to get Jacob set up with his voice control, using his Tobii Dynavox. He can now control his lights and fans by simply saying. "Hey Google"... turn fans on/off, turn lights on/off, etc. 

Jacob loves this voice control and says "It's amazing!"

UPDATE:

Approximately two weeks later, the ALS United Ohio organization sent Jacob more switches, two more Google Nest Minis, and a box of smart lightbulbs, giving him access to more control, as well as broadcast announcement ability.

06/13/2024 Leg Pain

 06/13/2024

Poor Jacob… almost every time he gets the lumbar puncture, it ends up causing leg pain. Some people have headaches, some people have backaches, and others have leg pain, while a few people experience nothing at all.

Jacob actually had the headache one time with this, and quickly decided the leg pain was preferred.

06/12/2024 ENT Dr DaSilva

 06/12/2024

Our final appointment today was with Dr. DaSilva, an ENT with OSU Werner Medical Center. This was an awesome appointment! After examining Jacob, he told us that he looked great! Teeth and gums are awesome, which shows excellent oral hygiene at home.

He set our Trach change for every 90 days, which due to conflicting reports, was information we greatly needed. Additionally, to address Jacob becoming sick after the change, he suggested deflating the cuff two or three times to perform suction to remove buildup secretions that may be lying on top of the cuff. Looking very much forward to giving this a shot, once it’s time for another change. Dr. DaSilva will see us again in one year. 

06/12/2024 Assistive Technology

 06/12/2024

Appointment today with the OSU Assistive technology department. They demonstrated and ordered specific smart devices for the home, giving Jacob even more independence. With the Google nest, Jacob will be able to control lights, specific plugs, and Wi-Fi cameras in the home.

06/11/2024 OSU Mobility Clinic

 06/11/2024

New appointment with the OSU Mobility Clinic (Matt and Liz). Jacob received his new Microsoft Surface Pro (Tolt Technology) and took to it like a duck to water! He is amazing with that device and can now drive independently, completely unassisted!

06/10/2024 #12 ION363 (#6 in Phase 2)

 06/10/2024

Treatment #12! We met Marco at 8 AM at the Martha Morehouse Pavilion, OSU Wexner Medical Center. Once again, everything went perfect, and Jacob's blood work is all PERFECT again! All levels are back to normal. 

As with most other, Jacob had leg pain through Friday, 06/14.

06/08/2024 Tobramycin Round 2

06/08/2024

We started Jacob's second 28-day round of Tobramycin. This will be administered via nebulizer twice a day for the next 28 days. We will then run another 28 days off of the drug, followed by another appointment to see if we need to keep up this on/off routine.

06/06/2024 Accredo Express Scripts

 06/06/2024

I received a call from Accredo specialty pharmacy to register us as a new patient and begin Jacob‘s next 28 day run of Tobramycin. The drug was delivered on Friday June 7th and we started it Saturday morning June 8.

This run will last until Friday July 5th.

06/05/2024 Back to ER for PEG Tube

 06/05/2024

As suspected, the peg tube was not placed properly last night at CAMC. We had to head back to the ER this morning to get it changed again. This time, we elected to drive back to Cabell. It’s much further for us, but they are familiar with Jacob’s particular tube.

06/04/2024 PEG Tube

 06/04/2024

Jacob’s PEG (feeding) tube had become dislodged again. We elected to use CAMC Teays for the change, because it was much closer for us. We actually only spent about 3 hours in the ER. The balloon had become deflated and the PA offered to inflate it, but since we were already there, we went ahead and had them replace it. The PEG tube they used was not like the one they took out. 

When we arrived back home, we immediately noticed issues with the new tube. The fluids would not go down easily.