12/29/2023 ENT

 12/29/2023

Today is our first visit with Dr Lyndsey Stull. She is the only ENT doctor that we were able to get an appointment with in a timely manner. She is fairly new, so we were not able to find out much about her beforehand.

We were pleasantly surprised! She was very professional and seemed genuinely concerned for Jacob's well-being. She performed the first trach change since his surgery back in November. This should be done every 4 to 6 weeks, so this change was a bit difficult on him. He was terrified, and quickly saw how easy the process would be. It was a good visit! We are due back to see her in six weeks.

12/24/2023 Christmas Eve

 12/24/2023

Christmas Eve and Jacob continues to improve!

12/19/2023 Cardiologist

12/19/2023

Due to the respiratory trauma Jacob suffered on November 5, Dr. Ahmed Sakkal, the ICU cardiologist, had put Jacob on a drug called Amiodarone. Amiodarone is a very dangerous heart medication. It is generally referred to as a last resort medicine because of its long-term side effects, such as pulmonary fibrosis, thyroid dysfunction, hepatitis, neurotoxicity, and even death. Definitely something we did not want Jacob taking.

(12/07/2023) At our four week follow up appointment, I had asked Dr. Sakkal to take Jacob off of this medicine. It was only supposed to be a four week medicine to begin with. He would not stop the drug, but instead reduced it to an every other day dosing. After learning all of the dangerous side effects, I made the decision to call the doctor today with an ultimatum. He agreed to take Jacob off of Amiodarone and replaced it with a beta blocker, called Metoprolol Tartrate. 

Because of the doctors refusal to remove this dangerous drug from our 24-year-old child, in spite of my ultimatum, I still decided to seek a different cardiologists. We were able to get a referral to Dr. Stanton, arguably the best cardiologist in our state.

12/05/2023 Botox

12/05/2023

Once again, Dr. Hollinger made an awesome decision regarding Jacob's health. He elected to inject Jacob with Botox. In ALS patients with saliva issues, injections of Botox into the salivary glands, can reduce slobbers and improve quality of life for approximately three months before needing repeated. Dr. Hollinger injected 100 units instead of the 150 recommended units. This was to ensure Jacob tolerated the injection.