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!

07/24/2024 McDonalds Fundraiser

 07/24/2024

Tonight was our second annual McDonald's fundraiser. We use this event to raise funds for our "Wheelin' for ALS" event. McDonald's hosted us from 5 PM to 8 PM, with a portion of the store sales going to our cause, as well as donations from tip buckets located around the property. The Winfield Baptist Church youth group showed up to assist both in and out of the store. It was a HUGE success, which brought in approximately $2000 in total raised funds for the night!

07/19/2025 ALS Clinic

07/19/2024

We attended the ALS Clinic at Marshall University today. Our appointment went great. Dr Hollinger seemed pleased with Jacob’s progress and made no new recommendations.

07/07/2024 Stopped Glycopyrrolate

07/07/2024

Dr. Hollinger stopped the glycopyrrolate (Robinul) for slobbers. 

Things are going great. This was a temporary drug to control, slobbers and excessive secretions. Jacob's body has grown accustomed to the tracheostomy, and even after stopping the drug, we have seen no increase in his secretions, so this is one less foreign substance in his body.

07/07/2024 Stopped Tobramycin

 07/07/2024

The second 28 days of Tobramycin Is complete. We will pick this back up 28 days from now.

07/04/2024 New Arm Movement

 07/04/2024

Barb has begun doing home exercises with Jacob. These exercises are very similar to what Jacob receives at physical therapy each week. She does this 20 to 30 minute routine with him, at least once a day, sometimes twice. 

These exercises have limbered Jacobs joints up allowing him to have less atrophy and more movement in his limbs. 

Today, she discovered his left arm having more strength. In fact, by simply keeping his arm balanced by holding his fingers, he is able to move his arm back and forth using his own strength.

THIS IS A VERY EXCITING STEP IN THE RIGHT DIRECTION!

See Video Here:

https://youtu.be/886v9IMazh8

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.

05/24/2024 Easystand Video

 05/24/2024

The Easystand ALS Awareness month video was uploaded featuring Jacob’s journey!

https://youtu.be/0WHuy4KwuyE?si=u07YBcduuFrPfTyz

05/10/2024 Trach Change

 05/10/2024

New trach change. I performed this one at home, with the help of Mike Walker. It was a super easy change, however, as always, in the evening, Jacob had a fever of 102° and was sick until the next day. on a side note, Jacob discovered he really likes the Ambu bag*.

(*Mike used it on him while I prepared the new Trach. It wasn’t actually necessary, but Jacob enjoyed it and it seemed to feel good having his lungs expanded)

05/09/2024 BOTOX

 05/09/2024

Appointment with Dr. Hollinger at Marshall Health for Botox injections. He was going to put a little Botox in Jacob‘s jaw muscles to help with atrophy, but noted that home exercises had seem to make quite a difference. He chose not to inject the jaw in light of this discovery.

05/08/2024 Stopped Tobramycin

 05/08/2024

The first 28 days of Tobramycin Is complete. We will pick this back up 28 days from now.

05/07/2024 Infectious Disease Appointment

 05/07/2024

We had an appointment today with Doctor Nusair of the Marshall University infectious disease department. He said everything looked great with Jacob and elected to continue him on with theTobramycin prescription. This will be a 28 day on, 28 day off regiment that will continue indefinitely.

04/25/2024 More Antibiotics

 04/25/2024

Jacob’s peg (feeding) tube is oozing, and it could be infected at the stomach entrance. Dr. Hollinger wanted us to go to the ER, but we elected to take him to Dr. Trump at Dunbar medical. Dr. Trump elected to do a culture swab and discovered that it is, once again pseudomonas. He prescribed a liquid antibiotic, levofloxacin 20 mg once per day.

04/19/2024 ALS Clinic

 04/19/2024

Today was our final ALS Clinic at Smith Hall/Marshall University. Everything went great, and our doctor is very pleased with Jacob‘s condition.

04/12/2024 Tobramycin

 04/12/2024

We were finally able to get Jacob‘s 28 day prescription for Tobramycin filled. This will be administered via nebulizer twice a day for the next 28 days. We will then run 28 days off of the drug, followed by an appointment to formulate a plan, moving forward.

04/07/2024 Cefepime Antibiotic

 04/07/2024

After our most recent hospital stay, Jacob was placed on a seven day antibiotic treatment (Cefepime*), which required injection, via a picline tube in his arm. We finished this run of antibiotics on Friday morning, April 5. Tyler, from Home Health, came by and removed the picline on Saturday morning, April 6. 

* Cefepime is usually reserved to treat moderate to severe drug-resistant microorganisms (e.g. Pseudomonas)

03/29/2024 Good Friday

 03/29/2024

After waiting all day for a doctor, again, Jacob was finally released around 5 PM. We received education on administering the antibiotics, saline, and heparin, at home. A pic-line was placed in Jacob’s arm allowing us to administer the aforementioned drugs. After the past 48 hours, we are all three exhausted, but grateful to be headed back home! It’s Good Friday! Glory be to God in the highest!

03/28/2024 Infectious Disease Doctor

 03/28/2024

The infectious disease doctor finally showed up today around 5 PM, 24 hours after being admitted. They started Jacob on an IV antibiotic and heparin to combat possible blood clots.

03/27/2024 Psudomonas Infection

 03/27/2024

Dr. Hollinger consulted with Dr. Al Ourani (from pulmonology) and Dr. Kolb (from OSU). The decision was made to treat Jacob‘s pseudomonas infection with hospitalization and IV antibiotics. We were admitted at Cabell Huntington Hospital at 5 PM and would spend the next 24 hours waiting for the infectious disease specialist to see Jacob.

03/20/2024 #11 ION363 (#5 in Phase 2)

 03/20/2024

Treatment #11! We met Marco at 8 AM at the Martha Morehouse Pavilion, OSU Wexner Medical Center. Once again, everything went perfect, but Jacob's blood work is all messed up. All levels are either high or low in every test. This could be from the pseudomonas or possibly from partial dehydration. As with most other dosings, Jacob had leg pain through Sunday, 3/24.

There was some consideration of not going through with the dosing, due to the bacterial infection. Fortunately, Dr. Kolb made the decision to move forward and a culture was taken of Jacob's tracheostomy secretions to see what course of action is needed to treat the infection.

03/19/2024 Back to OSU

 03/19/2024

We headed back to Ohio State today and took care of all Jacob's blood work at the lab with Marco. Once the blood work was completed we proceeded to the third-floor to the mobility section of the hospital. There, three technicians Tag-Teamed Jacob and helped him with comfort and convenience issues with his power chair. They set him up with Ability Drive… This is a Microsoft Surface Pro, which allows Jacob to drive his chair with his eyes. They added this to his chair, and he scooted around the entire room using his eyes. Jacob loves it! This, along with new armrests, have been submitted to our insurance for approval.

03/15/2024 Trach Replacement

 03/15/2024

I elected to replace Jacob's trache at home this time. Dr Stull had previously educated me on this procedure, and I felt relatively comfortable with it, but I asked Heather and Stacy from Apria Healthcare to be here to supervise me in the event of an issue. 

This makes the third time this has been replaced since the surgery, last November. Each time it pretty much wipes Jacob out for the next two days. It results in low-grade fever, body-aches, chills, etc.

Heather noted that Jacob seems to have a bacterial infection known as Psudomonas, commonly found in respiratory cultures from patients with tracheostomy tubes. Dr Hollinger says it's nothing to worry about and does not need treatment. 

03/14/2024 PEG Tube Trouble

 03/14/2024

Jacobs feeding tube would not allow anything into his stomach. We tried Coca-Cola and other methods to dislodge the blockage, but nothing worked. Cortni, with Marshall Health, recommended we take him to the ER. We drove to Cabell Huntington Hospital and ended up spending more than six hours waiting. Finally, the doctor was able to examine Jacob and discovered the balloon on the end of the PEG tube had become deflated. He easily pulled the tube out and replaced it with a new one. 

A quick x-ray showed that there were no internal issues and everything was back the way it should be. We finally arrived back home around 3 AM.

02/20/2024 More PT!

 02/20/2024

Dr. Hollinger had noted increased strength in Jacobs legs and arms. Additionally, his therapist, Ben, had also noticed the increased strength in recent physical therapy sessions. Due to the fact that Jacob is improving, he now qualifies for an additional day of PT, resulting in two days per week!

Today was our first session in this change. Ben has added neck strengthening exercises to Jacob's routine.

02/16/2024 Manuscripture

 02/16/2024

Dr. Stanton had one of his nurses call us and tell us that he had ordered a gift for Jacob, which we could pick up at any time in his office. I drove to the office to pick up the item which was a beautiful piece of art called a Manuscripture. 

This act of kindness and love speaks volumes about Dr. Stanton's character and obvious love for his patients. We are humbled and honored that he thought enough of Jacob to gift this to him. We will proudly display it in Jacob's bedroom above his headboard.

Isaiah 41:10

Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My righteous right hand.

02/14/2024 Heart Monitor

 02/14/2024

We removed and sent back the Zio heart monitor. Now we wait for the results from Dr. Stanton.

02/08/2024 Botox Round 2

 02/08/2024

We went back to Cabell Huntington Hospital for Jacob's second round of Botox injections. This time Dr. Hollinger upped the dosage and is certain this should do the trick for the excessive saliva.

02/03/2024 Discharged

02/03/2024 Jacob was discharged around 2 PM today. We went straight home. He slept most of the day! All is well and hydration is paramount!

02/02/2024 Back to the ER!!!

 02/02/2024

Around 8 PM, Jacob started coughing and could not stop. I suctioned him at least a dozen times, but could not get the rattle out of his chest. We finally decided to go to the emergency room. This was an all too familiar road, so we were airing on the side of caution! Because of the November 5 or deal at CAMC Teays Valley, we made the decision to go to Cabell Huntington Hospital, where our neurologist practices. Dr. Hollinger called ahead for us and the ER crew took a straight back! The chest x-ray looked great, but his bloodwork and vitals indicated a bacterial infection, and more importantly, dehydration. The rattle was a mucous plug in his right bronchial airway, which eventually came loose on its own. They kept Jacob overnight and ran several antibiotics and IV bags through them! 

Moving forward, we need a better plan for hydration at home.

01/31/2024 ENT 2nd Visit

 01/31/2024

We went back to Dr. Stull's office for a follow up visit and tracheostomy change. I actually did the change, while the doctor supervised and assisted me. Jacob despises the trach change. It causes coughing, slight fever, and much suctioning and discomfort. We have elected to limit these changes to every six weeks now. 

The doctor said any additional visits would be as needed.

01/30/2024 Heart Monitor

 01/30/2024

I received a ZIO heart monitor by mail and applied it to Jacob's chest today. It is supposed to stay on him for two weeks.  

01/24/2024 First Visit with Dr Stanton

 01/24/2024

Today was our very first visit with Dr. Stanton. He is considered by most to be the best cardiologists in our area! He generally only sees four patients a day and is nearing retirement, however, he was kind enough to see Jacob! After our initial meeting, he quickly determined that there were no issues with Jacob's heart, but to be safe, he would be bringing us back in two days to perform further tests, an echocardiogram, and a two week review of a heart monitor.