Day 813 - Day 19 of Never-ending RSV

Thursday, March 23rd, 2023

Today James started the morning at 6am with a wet cough and lots of suctioning of his nose. James has never really coughed before, even though this is the main symptom of RSV. Sometimes with trach kiddos it hits them differently. So today we had a pulmonology appointment scheduled. This appointment had been scheduled since the 1st of the year as just a follow up. Of course we thought this would have been an appointment to follow up post decannulation but alas it would not. Due to James' symptoms this morning Mom called them to cancel. They don't want sick kids there either. 

Mom couldn't believe that James was feeling worse at Day 19 of RSV. This wet cough wasn't from the ear infection and he had never had a cough before with any of his previous trach infections, so it had to be lingering RSV. They said RSV would only last 2 weeks and here we are on week 3. Mom reached out to the Trach Mom's FB group to see if RSV had lasted longer for any of their medically complex kids. [Posted below 👇]. It turns out that it did. Sometimes 6 weeks and others for months. 

Videos below:

1) James laughing to the Bluey Intro! He laughed at every name: Dad, Mum, Bingo, Bluey! Those are the lyrics in case you're wondering. 🎵

2) At night James played with his animals, feeding them and having them dance together. He also signed for Book. It's his new favorite sign! James has learned the sign for: More, All Done, Toy, Diaper Change, Play, Eat, Mom, Dad, Nap/Sleep, Ball, Suction, Want, and Help. 🤟🏻🤘🏻✌🏻👌🏻 He also knows all of his colors, Basic Shapes, Numbers 1-5, and a few letters. Ask him to point to something in a book and he'll find it no problem. He has a large vocabulary and is impressing us everyday!

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