Day 848 - Decannulation Day! James Joins the Naked Neck Club!

Thursday, April 27th, 2023

Take two! Second times a charm! Let's try this again!

It's been 7 weeks since we were originally scheduled for decannulation. James survived RSV but it really took a toll on him for a whole month! Today James has his airway evaluation! If everything looks good and he doesn't need to have reconstructive surgery, or have his tonsils or adenoids removed then his trach will be taken out. He will then be monitored overnight in the hospital without a trach. If successful, he will come home with just a Band-Aid on his neck! James will have joined the naked neck club! 

Yes and we are over 1 week behind in the blog. Don't know if we'll ever catch up. Getting just one post a day done is a lot right now. Thank you so much to those of you who have reached out! ❤️ Depending on how this week goes we will most likely be wrapping up the blog with his decannulation.

🏥🥼👩🏻‍⚕️🩺👩🏼‍⚕️💉👨🏾‍⚕️🩻👩‍⚕️

Success! After 848 days, James officially joined the naked neck club! 

James started off in the OR under anesthesia for about an hour. The doctor performed a microlaryngoscopy, a rigid bronchoscopy, with tracheostomy decannulation. We received great news from our ENT doctor afterwards that the trach was able to be removed and he was doing well in post-op. She took photos of inside his airway (below) and showed us that she had to remove a granuloma by using medication to shrink the skin. In addition, this granuloma was sitting on softer (weaker) cartilage that was falling inwards to his airway. Once the granuloma was removed though she felt like there was more than enough room for airway clearance (photos below show progession of granuloma being removed). As James grows his airway will only get bigger! James had great numbers in the recovery room with 98% O2 sat.

However once we were transferred to the respiratory unit for overnight admission James' oxygen started to drop and wouldn't come up. He also sounded like he needed to clear his chest and throat but couldn't. Possibly because of the anesthesia. Mom reached out to a few trach moms for advice on decannulation post op, because the nurses said they weren't familiar. They waited to see if he would come up on his own but after 90 minutes they needed to intervene and put him on oxygen. It was so nuts because James hasn't needed oxygen in a while! It seemed like we had just traded the trach ties for a nasal cannula. We were very nervous that it wasn't going to work out...Then Mom started getting responses from others moms. It was comforting to hear that these seemed to all be normal symptoms and just part of the process. James was getting used to the big change, and it was also an invasive procedure. He would learn to cough more on his own along with chest PT. They said it would take 1-2 days to get back his baseline.

James was able to really cough a few times and by the evening he didn't need the oxygen! Dad stayed the night so Mom could go home and rest since she was up the night before with James at home. This room was much nicer than the PICU and reminded us of the NICU with a couch and our own bathroom. His neck looked surprisingly well for having trach ties tied so tightly around his neck his whole life. He now will just have a waterproof Band-Aid on his stoma until it closes on its own. If after 6 months it is still open they will surgically close it. We are so excited for this next chapter!

🩺 Medical Terms Explained:

Microlaryngoscopy is a surgical procedure that allows a provider to view your vocal cords with a microscope. During this procedure, they may also remove lesions (growths) from your vocal folds or correct movement disorders of your larynx (voice box).

Rigid Bronchoscopy is a technique that visualizes the trachea and proximal bronchi. They use a rigid, straight, hollow metal tube to gain better access to the patient's airway by allowing insertion of instruments or airway devices.

Decannulation is the process of removing the trach.

Granuloma is an area of inflammation (the way your body protects itself from something harmful) in your body. Granulomas are clusters of white blood cells that “wall off” bacteria, a foreign object or something else it thought was harmful from the rest of your body. (In James' case the foreign object was his trach in his trachea)

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