Day 267 - GI appointment & No Nursing Today

Thursday, September 23rd, 2021

Today we did not have any nursing but we did have our first outpatient GI appointment. Our M, TH, F nurse needed the day off today and will be starting on Friday for her first shift with us. 

The GI appointment was very similar to our pulmonology appointment on Monday, in that it was very overwhelming to get to the hospital for the appointment and it really felt like it could have been a telehealth instead. The waiting room was packed full of kiddos that were not medically complex. We waited to get called back as ventilator and pulse ox alarms went off constantly. Must have been 120° outside here in Florida. James was drenched in sweat and very upset. Mom and Dad were also soaked just getting in and out of the car. The only change we made at our GI appointment was that we increased his feeds from 37/hr to 38ml/hr. They wanted to get his height and weight which means getting him out of his car seat attached to multiple pieces of equipment to lay him down on a examination table with the paper rolled out. We told them that we just got this yesterday from the pediatrician appointment, they are literally 5 feet from this office. So Dad went to their office to get these numbers so that we didn't have to get James out of the car seat for no reason.

At night, we gave James a bath and he loved it so much at point one he held the side of the tub. It's super hard to take photos while in the middle of these things, but we try!

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭