3 month appt

It has been a while since we had an appointment with the nurse practitioner, Annie. Let me explain. Emory does appointments every 3 months, unless there is a "problem" or a lot of changes. Every other one is with the nurse practitioner at an office NOT downtown and you are in and out in an hour or so-just questions and touching base. The alternate ones are the multidisciplinary ones with the whole team (doctor, nurse, PT, OT, students, research, nutrition, etc) and take 4-5 hours. Our last appointment with Annie was September 2016. We then had the multidisciplinary appointment in December and there we so many changes and new things going on with respiratory and weight loss that a follow-up with the multidisciplinary team was made in February. Then in May, we were in the hospital, so we did not make up the quick check up appointment with Annie. At the very end of the July, there was another multidisciplinary appointment where we ended up in the hospital again with pneumonia.

So, anyway, it has been a while! It was good to see Annie and catch up. It was also a great quick appointment to get just a few concerns addressed and do a weight check!

~Jason's weight 153lb. This is up by 3 lbs since we were last in the hospital.

~Blood pressure and heart rate were normal for Jason since ALS diagnosis (BP used to be higher and HR lower than it has been since he stopped doing Insanity and P90X!)

~Jason also takes some drops to decrease saliva that taste horrible. They are actually eye drops (atropine for you medical folks). Unfortunately, there is no alternative or better tasting drops.

~I feel like Jason's skin is thinner, but the NP didn't necessarily think any intervention needed to be made. The skin is just more sensitive to scratches and pressure.

~We asked about getting pneumonia shots and it is recommended that Jason get them. There are 2 out there. One has 23 (Pneumovax) strains of resistance and one has 13 (Prevnar). These 2 are recommended for everyone over the age of 65 one year apart, but they are also recommended for long-term heath problems, people with weakened immune systems, people with asthma and those that smoke. Side note: the Prevnar is commonly given with childhood vaccinations as well, but can be repeated at less than age 65 once.

CDC guidelines

Vaccine information sheet

Jason got his first pneumonia shot on October 25. Also of note, this does NOT prevent pneumonia from happening 100% of the time. There are strains that each cover from community acquired infections-someone sick being around you. Unfortunately, the trach gives direct route of bacteria entry into the lungs, so there is always a cleanliness risk there, no matter what we do for prevention.

We do go for a trach change out on November 8, but next doctor's appointment (multidisciplinary) is next year!