Day 587 - ENT Appointment👂👃 🗣️

Tuesday, August 9th, 2022

We had an early morning ENT appointment. We hadn't seen them since January. The goal of this 6 month check-up appointment was to see where we are at in getting off the ventilator and plan for decannulation. Needless to say but she was also disappointed that we didn't start the trials off the vent yesterday. She explained that once James is off the vent completely it will be about 9 to 12 months after that until he gets his trach out. She did a bronchoscopy to check his airway and look at the granuloma in his stoma. She was able to cauterize that with silver nitrate. James was not a fan. (It stains your skin brown and takes forever to come off.) He tried sticking his fingers into his stoma blocking the doctor from applying the compound so Mom and Dad had to hold his hands down. The doctor let us know that the secretions she saw looked thin and white. However at home we typically see thick and yellow. She was concerned about James doing another round of antibiotics and becoming immune. 

Mom heard back from our Medicaid case manager and she said the Cipro was approved. We just needed to contact the pharmacy again. The pharmacy let us know that even though it was approved by insurance they didn't have any in stock. The closest pharmacy was 30 minutes away. During the week we don't have the option to leave since Dad works. He is already squeezing these doctors appointments into his schedule around phone calls and meetings.

Dad was able to pick up the prescription later in the evening but when Mom checked it we were missing 2 pills. 🤦🏻‍♀️ Everything always seems to go this way. We decided not to give him any of it in case they needed to recount. Tomorrow we would have to go back to the same pharmacy to get this fixed. Now we will always check our medications before leaving the pharmacy. (Stuff you shouldn't have to do).

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