We also had a lovely discussion with our outpatient case manager. We just love her--when she talks, things get done. We had some things to arrange, including: 1. getting a sonic vest for Dakin--he is so over the chest percussions we have to do for CPT and I think he'll enjoy the vest. 2. We are having AMBU bag issues (the new one we got sucks, and that is not a good thing, as we frequently use the AMBU to keep Dakin clear of chest secretions). So she's going to get us a new one! 3. She is putting in a prescription for lithuim ion batteries!!! This is awesome, because the backup battery for Dakin's vent is a huge, heavy car battery. The lithiums are light and small. We have been trying to get some since I don't know when...I should have just asked her in the first place.
They are also going to fight valiantly for us to get Synagis shots for Dakin this winter. Synagis helps prevent RSV, a virus which would be potentially fatal for Dakin. Once the kiddos are 2 they usually can't get it, but his birthday isn't until the end of October, so we may be able to swing it one more winter. Keep your fingers crossed. All in all, an extremely long day, but worth it. I just love it when they say he looks great...ah...blowing sunshine at me. Sigh...LOVE good reports.