Day 754 - Culture Positive for Steno Malto 🧫

Monday, January 23rd, 2023

Today was Dad's day off and took in Mom's car for a tune up since we had a long drive to Atlanta this week for Dad's end of year awards banquet for Cutco.

Mom spent the day with James. We received a call from one of the doctors at Nemours letting us know that the culture came back with a strong growth of stenotrophomonas maltophilia, which is a gram-negative bacterium. 🧫 😮 James has had this once before. It is antibiotic resistant and can be fatal for those immunocompromised individuals. It's a shame that the PICU didn't continue the Cipro that the ER gave him. James could have been on it for 5 days by now. Nemours wanted the pulmonologist's phone number (again! 😳) so they could inform them of the infection and let them decide on treatment. Mom decided to reschedule James' nutrition appointment at the hospital tomorrow since James was indeed really sick. We also changed PT to virtual.

📞 Eventually Mom heard from the pulmonologist's office who was just calling to ask a few medical questions. Mom let them know that Cipro had worked in the past and that he was allergic to Bactrim, which they didn't even have listed in his records. 😑 Mom informed them that James received one dose of Cipro on Thursday night in the ER but that was it as well as letting them know that LEVOFLOXACIN would be our only other option (James had never had that).

The pulmonologist's office called again 2½ hours later at 6pm to let Mom know they really wanted to prescribe him Bactrim because it's really strong, but of course they couldn't. They weren't going to prescribe Cipro because it's a good antibiotic that works for James and didn't want his body to become resistant to it. So they decided to call in Levaquin aka Levofloxacin, which is similar to Cipro but a little stronger. Mom let the nurse know that we have always had an issue getting antibiotics approved through insurance. She said that if we have any issues we could call their office tomorrow to get a prior-authorization.

So Mom spent the rest of the night on the phone with CVS and Medicaid trying to get the drug approved but we needed a prior-authorization! 😫 Go figure! This happens everytime and it doesn't make any sense why they wouldn't just go ahead and do this! At this point, the office was closed and our Medicaid case manager wouldn't respond to Mom's text until tomorrow.

Dad came home late but with a new car! 😱 🚗 

Making the bed go up and down.

Turning on the bed vibration.

The best sound machine is Gentle Rain on YouTube. 

 

James listening to Leon Bridges' Tiny Desk Concert.

Anything can be a toy.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com