Day 734 - Pulmonology Appointment & Picking Up Medical Supplies
Tuesday, January 3rd, 2023
We started off with an early morning Pulmonology appointment. Mom is now going to these appointments alone since James is more stable. This was going to be his last Synagis shot to protect him from RSV. His insurance only covered 5 during flu season AND since he turned 2, he will no longer be covered in the future. So this was the last one forever! (Although James actually get 2 shots at the same time because it's based on his weight.)
Prior to getting the shots Mom spoke with the nurse practitioner. Mom went over everything including the concerns with Toby causing the thick secretions that were not able to come up because they were so deep. She said that as long as when he woke up he could clear them, he is fine with sometimes needing oxygen support at night. We definitely figured out that giving albuterol for 20 minutes, then pulmicort for 20 minutes, and then Tobramycin for 30 mins (all separately) has helped as well as doing these treatments earlier before he goes to asleep. This gives him an opportunity to bring the secretions up. When treatments start after he is sleeping he isn't moving around or coughing; it's also not ideal to sit him up while he's dead asleep and pat him on the back. The nurse practitioner said that since he is doing so well his next step would be to schedule a sleep study. She said the Hospital would call me to do that. Yay! 👏 It's so exciting! The other things we spoke about was to get a scripts for additional medical supplies. One being that he goes through to HMEs a day but we only get 30 a month. The other was a script for additional Aerogen solo cups to our Aerogen nebulizer machine. Online they are outrageously priced at thousands of dollars. What happens is that his tobromycin is really sticky and clogs up the solo cup which is where the medicine is administered. We only have two cups that we have been washing with hot water and vinegar every two weeks with the circuit change. But it has gotten to the point where that is not helping anymore. The medicine just doesn't go through. We purchased our Aerogen out of pocket for almost $600 so not being able to use it really sucks. Mom was directed to email one of the women in the office to get these orders put through.
James pointed to all of the animals around the room and could name them all. He definitely cried during his shots and unfortunately they decided to do measure his End Tidal CO2 after the shots. Being upset at can cause the CO2 to skyrocket and not really give an accurate reading. So we waited for about 30 minutes for it to come down.
Since we had been having issues with finding new Aerogen solo cups Mom had reached out to a couple of her trach mom friends to see if they had any extras. These cups are a hot commodity. They are no longer found on eBay, only on medical supply company websites for way too much money. In the different Facebook groups you'll see a lot of people asking for them and no one having any extra to spare. We did luck out that her local trach mom friend had one we could have. So James and Mom headed off to New Port Richey which was about an hour drive from the pulmonologist's office. James danced and napped in the car as usual. He got puppy kisses from their adorable Pomeranian and was just wanting to scoot around on their new home. They were in the middle of moving while their sweet girl was still in the ER. That is just too much handle at once! We left with a new Mickey Mouse stuffed animal to bring on our cruise. Only 3 days left to pack! 😬
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