Trach change

It has been 6 weeks since the previous trach change. The lung team wants to keep these appointments more frequent than every 3 months just to keep a closer eye on things and to do frequent cultures of the bacteria. As written in the multidisciplinary appointment blog on 6/22/18, a culture from one of the trach change broncoscopy cultures came back with a positive bacteria back on 6/20/18 called Mycobacterium Avium Complex, or MAC. MAC effects people with compromised immune systems or people with underlying lung disease. If you really think about Jason and his case, he doesn't fit either of these categories "to a T" At the same time, he kind of fits them with lungs that chronically do not work by themselves because the diaphragm will not extend on its own and he is also compromised because of the always open entry for bacteria into the lungs via a trach.

Information on this bacteria:

Mac lung disease-UTHealth

Mycobacterium Avium Complex (MAC)

Genetic and Rare Diseases Information Center

Sensitivities to the culture (what antibiotics work for bacteria that has grown) have come back, and we are changing the plan slightly, but not in concern with the MAC infection. This is because the doctors believe that Jason's trach is just colonized with this bacteria and not actually causing active illness. Colonisation does not normally harm a person because it is part of the normal bacteria or flora of the body and does not cause active infection that would need to be treated with antibiotics. More information (and this is a very good article!): Colonisation vs. infection

So, the plan after doing the trach change out and broncoscopy to collect and culture more sputum is to change the inhaled antiobiotic from gentamicin to amikacin. We are also eliminating one of the antibiotics that he was switching back and forth with because we felt that he took a dip in how he felt while doing the 2 weeks of doxycycline. We will just do bactrim twice daily all the time.

Overall, the appointment went well. It was quick and uneventful. It was interesting to see how everything would go with a 3 week old and getting to downtown Atlanta in a timely fashion, but all went well. Jason's mom and Annalise stayed in the waiting room while we were in pre-op, the endoscopy suite, and PACU for about 3 hours-she got a lot of baby love that day!

AND...I just have to throw out HUGE love and thanks to Jason's parents for making this whole process of becoming parents as seemless as possible. I'm just not sure how we could do it without them. I can take care of Jason's needs and wants. I feel adequate taking care of Annalise's needs and wants. It is quite challenging when they both need or want something at the same time, which is often right now.