11/15/2024
Today was our ALS clinic with Dr Hollinger. Additionally, he performed Jacob's Botox injection. He seemed concerned that Jacob may be depressed. I'm sure, to some extent, this is true, but currently, the big issue is the frustration from not being able to communicate. I truly believe, once his eyes are working and he can use his device, he will be right back to normal. Dr Hollinger seemed to agree with this assessment and asked me to just keep an eye on him.
11/06/2024
We had our third call with Bridging Voice. Was to follow up with our osu visit. They are very excited about our decision to move forward with the scleral lenses and we'll have another call with us once Jacob receives his lenses and is wearing them.
On a separate note, we also had the opportunity to meet Gary and Carol Godfrey, via zoom. Gary is also an ALS patient and scleral lens wearer. Bridging Voice connected us with these wonderful people and they have instilled so much hope and excitement for what these lenses can and will do for Jacob.
11/05/2024
It has been 90 days since Jacob's last trach change. I elected to do it today with the help of Mike Walker. 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.
Unfortunately, Dr. DeSilva's procedure did not work this time! This change was extremely difficult for Jacob. He was sick throughout the next few days. This could be because he had COVID with this particular device, or 90 days could simply be too long to wait. The manufacturer recommends 30 days, so I think we will try that the next few times and see if he does better.
11/04/2024
I scheduled us an appointment with Dr Stephanie Pisano of the Ohio State University. Dr Pisano and her staff were quickly able to diagnose Jacob with dry eye syndrome. They test fitted a generic set of lenses on Jacob to see if he could tolerate them. It was perfect. He could see, his eyes were open and he tolerated the lenses just fine.
With that, the order was placed and we will return on November 26th for training and fitting of Jacob's new lenses.
10/29/2024
Check up at Dunbar medical. Dr Trump is very pleased with Jacob's vitals. Other than ALS, he is in perfect condition.
10/29/2024
We had a telehealth call with Dr Nusair today, our infectious disease specialist with Marshall Health. He scheduled our next visit for March and will remove Tobramycin at that time. He is very pleased with Jacob's progress, and sees no need to continue the drug much longer.
10/28/2024
We had our second call today with bridging voice .org. Today's meeting was once again with Lane Rials, and her supervisor, Nachum Lehman.
Using my iPhone during the zoom call, Nachum was able to examine Jacob's eyes and determined that he was likely suffering from dry eye. This was the first official indication that we have had on this. Barb and I had assumed this was the issue, but now having this professional opinion confirmed our suspicions. He went on to explain several options to us, the best of which was the use of scleral lenses.
Scleral lenses are large rigid-surface contact lenses that are custom designed and computer lathed for each individual patient. Since these medical devices require proper evaluation and are prescribed by a licensed and skilled eye care practitioner, we had to search for the closest provider to our area. The first one was in Pikeville KY, but I was able to find another at Ohio State University (same distance). Because of our relationship with OSU, we elected to schedule the appointment there.
10/21/2024
Since the beginning of September, when Jacob contracted COVID, he has been struggling with his eyes. We believe he has a severe case of dry eye, as well as weakness in the muscles that control the eyes. These issues have affected Jacob's communication. His eyes can no longer effectively control his eye gaze device, so we reached out to Team Gleason for help and possibly replacing Jacob's device.
Team Gleason connected us with an organization called Bridging Voice. We had our first call with this organization today with Lane Rials. She discussed with us certain options that could possibly be available to Jacob but wanted us to have another meeting with her supervisor, Nachum, first. It was a very productive call, and left us very excited.
10/18/2024
It had been quite some time since we had Jacobs feeding tube replaced, so we scheduled this appointment as soon as we could, which ended up being the day after returning home from his treatment. It was a lot for him to endure, but Jacob is a trooper! While we were at Cabell Huntington Hospital, we were fortunate enough to meet Levi and Crystal Bragg! Levi is another ALS patient and Baptist Church pastor! He and his wife had prayer with us in the waiting room prior to his treatment and Jacobs Peg tube replacement. God is good!
10/16/2024
Treatment #13! Everything went well, blood work was good. Doctor Kolb had a little difficulty finding the "sweet spot" in Jacob's back, resulting in several attempts. This caused a little bit of back pain for Jacob the next day. We gave him Tylenol, which seemed to take care of the problem. His leg pain would persist, like most treatments, through the 19th.
10/09/2024
We went back to Dunbar medical for bloodwork to test the white blood cell count again. We are now 30 days past our intended dosing visit of 09/10/2024.
The results came back at 14.3, still not ideal, but definitely showing a downward trend. Weather this is a result of actually getting better and finally over the Covid, or the introduction of the tobramycin, we will take it!
Ohio State University has rescheduled our appointment for next week on October 16, five weeks from our intended dosage. We are excited!
10/01/2024
We are a week early, but in light of the white blood cell count, and the fact that we already have the medicine on hand, Dr Al Ourani and Dr Nussair both gave us the go ahead to start the medicine today.
10/01/2024
Today we had our appointment with Dr. Al Ourani at Marshall Pulmonology. Contrary to all the recent negativity, he tells us everything is GREAT! There have been very little, if any changes, in Jacob's health over the last six months and he is very pleased with Jacob's current condition.
09/30/2024
We had an appointment today with assistive technology department at Ohio State University. Jacob was scheduled to try out the Eye Gaze *Edge and the Tobii I -13. OSU was not able to effectively test the Edge Device because they locked the correct mount for it and the I -13 did not work at all. Even with his dry eye syndrome, he still prefers his old TD Pilot. I think it's just what he's used to using.
The ladies at OSU made some substantial changes to his device, trying to help him focus, and have better luck at communicating. However, when we arrived back home, Jacob made me change it all back, making this trip a complete waste of time.
On a sidenote, I was able to reach out to Team Gleason, who informed me they had an *Edge device in their closet, which we could try for a while. They are preparing it for Jacob and will be sending it out soon.
09/26/2024
Jacob seems to be doing fantastic. We returned to Dunbar medical today for more blood work. Once again, we were devastated with the results being exactly the same as last week... 17.4.
Dunbar medical ordered a urinalysis and chest x-ray. We were able to get a urinalysis at LABCORP on the Dunbar medical premises. However, the chest x-ray had to be done elsewhere, so we went to Marshall Health. Everything came back perfect, with no issues whatsoever. Sadly, Ohio State University will still not allow Jacob to receive his treatment until they see the white blood cell count trending downward. We are now two weeks past his initial 09/10 treatment date.
09/17/2024
At Dunbar medical today, we saw Jenny, a nurse practitioner. Due to Dr. Trump's own personal health issues, he made the decision to keep his distance. Jenny determined that Jacob had a slight ear infection on his left side and the blood work shows a still very high white blood cell count at 17.4. We will have to retest next Thursday after a week of the anti-biotic, levofloxacin.
09/16/2024
Today was supposed to be treatment #13, (#7 in phase 2). The procedure was canceled. After bloodwork and vitals, Jacob's temperature was still slightly elevated at 100.9°. His white blood cell count was elevated to 16.9, with normal being somewhere around 9 or 10. Ionis pharmaceuticals canceled the procedure and sent us back home.
Dr. Kolb was not his normal chipper self. He told us Jacob seemed weaker and did not seem as positive that the treatment is working. We feel like this is all related to Covid, but we are disappointed just the same.
We will have to see our family doctor tomorrow to evaluate.
09/15/2024
It appears that we are all finally over COVID-19. There is still some coughing and slight sinus drainage, but otherwise we are all better! We leave today for Ohio State University, and Jacob's bloodwork for tomorrow's highly anticipated treatment.
09/07/2024
We had to postpone our trip to Ohio State University for Jacob's 7th treatment in phase 2. Barb and Jacob both appear to be over the Covid, but ol dad is still infected after a second Covid test. The plan is to head out on September 16th.
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
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
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
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
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
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
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
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!
07/19/2024
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
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
The second 28 days of Tobramycin Is complete. We will pick this back up 28 days from now.
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!
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.
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
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
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
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
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
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
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
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
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
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
The Easystand ALS Awareness month video was uploaded featuring Jacob’s journey!
https://youtu.be/0WHuy4KwuyE?si=u07YBcduuFrPfTyz
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
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.
