Day 782 - First Nutrition Appointment 🌮

Monday, February 20th, 2023

Mom called the pulmonologist's office to let them know how our ENT appointment went last week see if we needed to move up our pulmonology appointment. We aren't scheduled to see them till the end of March but we have this airway evaluation on March 9th. 🤷🏻‍♀️ The admin there who is super nice told us she believed that pulmonology should be included on the procedure on March 9th, so she was going to reach out to our ENT doctor for the office notes from last week and get details.

We had physical therapy at the hospital and this was the first time that Mom would stay in the lobby and not go back with James. He cried and screamed as the therapist walked away with him. Took him a few minutes to calm down but he eventually did. The therapy is only 30 minutes anyways. The therapist said James ended up playing with another kid. He was a former trachie and G-tube kid who was a year older than him. James supposedly took his toy from him, so we need to work with James on sharing. 

In the afternoon we had our first nutritionist appointment. Dad said he wanted to come along. It turns out it was a good idea because James pretty much whined the entire time and Dad needed to distract him while Mom talked to the nutritionist. His nap is usually at 1pm and that's what time the appointment took place. Unfortunately we cannot schedule appointments around his nap time. A lot of these appointment times are the only times that available after being on a waiting list for months. Overall the appointment seemed kind of pointless since all we did was go over all the information that we already went over during our two phone calls. The idea is that she was going to do some math and call us back in 2 weeks with a new plan after she had received the okay from our GI doctor. 

Obviously our main concern is transitioning from a GJ back to a G-tube. On top of that an additional concern would be the fact that James has only gained 2 oz since June. He may be proportionate comparing height and weight but if you're never fed anymore you're not going to get any taller or heavier. We need to figure out a way to get him more calories without putting him in a situation for aspiration. We let her know that our main concern is that we are very close to decannulation and do not want to make any big changes in GI that could set us back with respiratory. She agreed.

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