08/31/2024 - 09/05/2024 COVID-19 UGH!!!

 08/31/2024

Barb (mom) woke up sounding a little rough. She says she feels fine, but we are very suspicious of the Covid possibility. 

09/01/2024 After our first church service I went to Walgreens and purchased a Covid test for Barb. It was positive within seconds. We still waited the allotted time, but there was no doubt that she was infected. She immediately isolated herself from the rest of the house to protect Jacob as much as possible.

09/02/2024 Jacob woke up feeling rough. He also tested positive for Covid. Dr. Trump recommended rest, Tylenol, and lots of fluids. His temperature is 101.6°.

09/03/2024 Jacob still feels drained… His temperature is still elevated at 99.6°

09/04/2024 He is much better today, but has a lot of drainage and requiring suction much more often.

09/05/2024 Dad also tested positive. It has successfully made its way through each one of us in the household 

08/26/2024 Follow up with Dr Stanton (Heart)

 08/26/2024

Today was our follow up appointment with our heart doctor, Dr. Stanton. We did not see Dr. Stanton, but instead saw Dr. Nancy Elwood. She was amazing! Jacob's heart rate is still very high. At today's appointment it was 111 BPM. Dr. Elwood elected to up the dosage of his metoprolol tartrate to 50 mg twice per day. This is up from 25 mg twice per day. She suggested we purchase a good quality blood pressure cuff, so we stopped at CVS pharmacy on the way home and bought a very nice Omron Series 10.

08/20/2024 BOTOX and Levofloxacin

 08/20/2024

Appointment with Dr. Hollinger at Marshall Health for Botox injections. 

On a separate note, Jacob was experiencing pain in his right ear. Dr. Hollinger suggested we see Dr. Trump. Jeff was able to see him same day. He determined that the ear was not actually infected but was definitely irritated and suggested a seven-day run of levofloxacin, very mild antibiotic, which Jacob has taken in the past.

08/13/2024 Tobramycin Round 3

 08/13/2024

We started Jacob's third 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.

08/10/2024 Wheelin' for ALS

 08/10/2024

Today was our THIRD annual Off-Road ALS fundraiser, Wheelin' for ALS. We had a pretty good turnout with local ice cream vendor, Lickity Scoops, on premise (BIG HIT). 

We did not take Jacob on the ride this year. The tracheostomy and lack of cell service on the trail, made it a challenging decision, but we feel the right one was made. We ended up right at $21,000 raised this year and will be supporting Racing for ALS, Marshall University and The Ohio State University. All three are on the front lines of supporting people with ALS and/or attempting to find a cure for ALS.

08/05/2024 LEG MOVEMENT

 08/05/2024

Occasionally, Jacob will tell us to look at a specific part of his body. It's because he can feel that he is able to move this limb, either for the first time, or more since the last time. Today, he had major movement on his left leg. This was the most substantial movement we have had since suffering total paralysis.

08/04/2024 Tracheostomy Change

08/04/2024

It has been roughly 90 days since Jacob's last trach change. We were scheduled to do this on August 10, but since our off-road ride is scheduled for that day, I elected to do it today instead. 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.

Unlike previous times, Dr. DeSilva's procedure proved to be the trick! This was the best change we have had since the beginning. No fever, no sickness, a perfect change!