Day 556 - Almost in the ER

Saturday, July 9th, 2022

Last night Dad slept downstairs and he did his care in morning.

Morning care for James (right now) consists of the following:

• Suctioning his trach because morning secretions are the thickest
• Changing his diaper because he's a baby
• Switching his pulse ox to his other foot to avoid burns
• Venting his G-tube with a 60cc syringe to release air
• Wiping and cleaning his helmet and his head
• Adding water to the humidification chamber
• Giving him his nebulizer treatment (Pulmicort)
• Giving him his Prevacid and clamping his G-tube for 45 minutes
• *Extra Bonus Points for eye patching too

Sometimes you'll be venting his G-tube and then need to suction him, and then go back to venting, and then back to suctioning. Sometimes you are unable to stop venting and you'll need to do both at the same time. You just figure out how to do it OR you lay the syringe full of gastric juice on the bed and worry about changing the sheets later and immediately suction him because his airway is at risk. 🤷🏻‍♀️

Dad also did 10 minutes of tummy time on the boppy, which he was very proud of. He is trying to earn his physical therapy badge. 😆 Then Mom took over for Dad in the morning so he could attend a work get together in St. Petersburg. Today James would spend the day with Mom. Unfortunately as soon as Dad left Mom noticed James' gauze around his G-tube was full of blood (photo below). She texted Dad and asked if anything had happened this morning. He had noticed blood prior to leaving. Then it clicked. Tummy time! Sad to say but it seems that changes button may have had a lot of pressure on it during tummy time. It is tricky trying to make sure both the trach and the GJ button (which sticks out a lot) both have clearance. Sometimes bobbys are too big for his torso. 😥

Mom ended up contacting some another Trach Moms for advice. Essentially in the end mom called the on-call GI doctor. GI Doctor, "Yeah I don't know what to tell you, if you think you should go to the ER then go". Completely useless. No suggestions on how to stop the bleeding, or what it could be, or even ask how he was doing.

Well the bleeding ended up slowing down; we were assuming it was just granulation tissue. Ideally it is better to get it cauterized and the button changed out at the same time. So that is what we are going to try for this upcoming week.

James prefers the box over the Legos.

James' favorite nighttime toy.

He did not appreciate the accidentally flash.

Blue eyes!

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