Day 285 - Two Synagis Shots & Mom Drives to Appt

Monday, October 11th, 2021

Today was the first time that Mom went to a Doctor's appointment with just a Nurse (without Dad). This means she needed to be highly directive with loading and unloading the stroller and car. Mom also had to drive while the nurse sat in the back with James. It was successful. 

At the pulmonology appointment James was scheduled for his synagis shot. This time they were requiring him to get 2 shots due to his weight. Poor baby was very upset! So much that he had diarrhea immediately. They checked his end tidal CO2 levels which looked good. Mom asked her list of questions which included... If we could let James be vocal by letting a leak in his cuff? And to review interesting billing claims. As far as the leak, since it was affecting his Tidal Volumes they said this would cause lung collapse overtime. So no, we can't let James be vocal yet. Maybe for very short periods of time.

Uncle Andrew left to go back to Arkansas. He said Goodbye to James in the photos below.

And the best news yet, we are getting our medical crib delivered tomorrow! Now hopefully insurance doesn't screw us and bill us a couple grand for it. Yeah this still hasn't been figured out yet...


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! 😭


Comments

Post a Comment

Popular posts from this blog

First Full Day of Pre-K 🎒 🟰 Off of Oxygen!

Image
Yesterday was James's first full day of Pre-K! For the past 2 months, James has only been able to do half days because of nap time; he required oxygen while sleeping. The great news is that James is now officially off oxygen completely! Also, we have worked with our GI team and the school nurses for them to be able to administer G-tube feeds at school, so he can stay a full day! It's so important to take the time to celebrate the wins because with a medically complex kid, there is always something to be working on! 👍🏻 From ventilator weaning to stopping the ventilator completely, to scheduling decannulation, to getting the trach stoma closed, to graduating from a GJ to a G-tube, to getting off of oxygen... It feels never-ending! That is just the medical side of it. There are also those normal things like walking, talking, eating... James has done great with those as well and cognitively he is acing everything! I recently saw a post from John Israel talking about perpetual dis...
Read more

James Takes His 1st Independent Steps!

Image
Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! 😭😭😭 Thank you everyone for the love and support! This summer has been INTENSE between learning how to walk and weaning off the feeding tube! Huge progress though!
Read more

Ella is 6 months old!

Image
Ella at 4, 5, and 6 months (and some extras)! Wow time is flying by because in 2 weeks she'll already be 7 months! 😱 She is such an easy baby! I don't mean because there isn't medical stuff because James was soo good too. Ella is just so chill. She can hang. Always smiley and content. Currently she has been making James laugh so hard! It is the best thing ever and one of these days I'll get it on video. James continues to be so sweet with her and I'd love for this to last forever!🤞🏻🤣 Soo much to update! Life has been great! If I ever find some time I would love to! ✌🏻❤️
Read more