3 month multidisciplinary appointment

It's that time again, the big appointment that lasts a few hours (we did it in 3!) and we get to see and catch up with everyone. The highlight was telling everyone our news of a baby girl on the way, but that wasn't technically the point of the appointment! It was a VERY cold day-the high didn't reach above freezing during the first few days of January. The Emory clinics have been under construction since before when I worked there (2013) and everything is finally up and running. That meant that we had to figure out the new valet parking system (very important because of the size and needs of our van) and it was a wind tunnel. I was moving constantly to get us inside, but Jason was stuck in this tunnel for a good 15 minutes :(

Anyway.....the appointment!

Jason is keeping his weight up. Back at the end of October, he weighed 153lb and was up to almost 155lb at this appointment. This may not seem like a big deal to anyone else, but IT IS! It means that he is getting enough nutrients and calories. It means that he is maintaining muscle mass and his body is not wearing away. It also makes us feel that we are doing something right! We have no way to weigh at home, so it is a "hold your breath" moment for me. Tube feedings do have side effects, but nothing that we can't control with over the counter medications (stomach discomfort being the number 1 complaint). We spoke with a nutritionist as well who supported whatever decision we made regarding tube feeds, whether to change or keep the same because of side effects. A good weight means that we can keep doing what we are doing and not change our routine when it comes to eating, so Jason did not want to make changes.

We did meet a new doctor that is covering for the clinic while one is out for surgery. Dr. Garcia was great. She spent a lot of time with us reviewing concerns that we have. It always seems like I have a long list, but most are just that I need someone to verify feelings or decisions we have already made. Our biggest concern is just a repeat of a concern back when Jason had a trach change back on November 8. The trach continues to leak saliva and Jason continues to produce saliva despite medication to help control and collapsing the cuff 3 times a day. Most important, what comes out of his lungs is abundant and not a preferred color! Dr. Garcia contacted our lung team so that we can do more antibiotics. Jason understandably does not want to go into the hospital, and it is a bit of trial and error with these antibiotics! We also got information on a few options for decreasing saliva and decided to try a scopolamine patch that is usually used for prevention of sea sickness in the general population, but can be used for severe nausea in the oncology world and has a side effect of decreasing saliva. With the new year comes new co-pays-holy moly with the scopolamine, but no worries-I will work some magic with phone calls before we need a refill!

On January 8, we did get a call back from the respiratory team, who prescribed liquid augmentin (amoxicillin/clavulanate potassium) ****repeat pricing holy moly comment here-I will make sure prescriptions are not in liquid form in the future**** but we wanted to try it. We wanted it to be a magic drug that fixed everything for good.

Being I am writing this on 1/26, can say that it did work and clear things up

in the 10 day prescription, but was not a magic fix in the end.

Our amazing nurse practitioner, Brittany also had a conversation about other options for leakage and to solve the problem of this constant infection recurrence, often called VAP (ventilator associated pneumonia) in the lung world. We were given information on trying a new type of trach, with the brand name Pulmodyne Blom, with our next trach change appointment on February 1.

Information here.

This is actually a great informational video!

After doing our research, we do plan to try this new device-see post after it is done!

Other than the big stuff, we did a lot of visiting and sharing of our news. We got to see an ALS association representative and MDS association representative, Sonja and Hillary. They keep in contact via phone call and email in between clinic appointments. We saw our respiratory therapist, Rob, who comes to our house, so technically we only visit during clinic appointments. We did see a few nurses and a research representative. We are not picking up any research studies at this time.