Vent clinic

We had our 3 1/2 hour vent clinic appt. today. Autumn did great like always and did not even cry when they had to prick her finger and get blood twice. Blood gases and chest x-rays were great. We talked about some equipment Autumn needs that we have not been able to get from our DME company...like another new trach, a back-up vent at home, and a vent stand. We also discussed how bad Autumn has been doing at night lately (thinking it's from being so tired without a breathrate during the day). So, we are taking a step back rather than forward and giving her a breathrate of 10 again during the day. We will see if that works to help with the desats at nighttime. They are also changing her formula since she will be a year old next month to Pediasure Enteral with fiber. So, now it looks like we are going to see about getting her on WIC so I don't have to keep paying for formula because if she did not have a button she would be off formula already and that stuff is so dang expensive. ;) So, Autumn had to give bloodwork twice so she would not have to go to the WIC appt. and can be medically exempt. It's a higher calorie formula and can you believe they think Autumn is still underweight..haha. She weighs 18.2 pounds and 24 inches long. That is funny to me because everyone comments on her chunky thighs and big belly. They wanted to make sure we start her RSV shots which is once a month from Oct-Mar. and get her flu shot. So, all went well but I'm dreading the upcoming trips coming up. After this week we will be home for 3 weeks and then back to Dallas..home again for 2 weeks then back to Dallas....home again for 2 more weeks and then Dallas once again...maybe they will let us skip coming in Nov and Dec. but I'm not holding my breath about it. We will be up at 5:00am in the morning for her MRI appt.