Barnaby is off CPAP. They decided that he was doing well and it was time to try him breathing completely on his own. They replaced his feeding tube around that same time and for the first time we got a photo of his little face with nothing taped to it.
In the ebb and flow of hospital equipment in his room, this was a big one.
It lasted about 12 hours. Then, in the night he started having more spells and they switched him to yet another new form of respiratory support. This time it was high flow nasal cannula which is less support than CPAP and has a new set of face hardware that, as Ana pointed out makes him look an awful lot like a Star Wars character just in time for May the 4th (star wars day).
Then he had a scary bad day with lots of spelling that ended up being probably attributed to his NG feeding tube being in a little too far and causing a gas bubble in his stomach.
May the 4th be with you
After a chest x-ray and some mechanical burping, this terrible day was followed by a really good night with no spells at all and now he is back on no respiratory support at all.
These are all really good problems compared to what we’ve been through but it is hard to keep that perspective. Everything feels difficult when it’s acute.
Barnaby 
Thank you for the udpates, Ross! It’s great to see the pictures and follow Barnaby’s journey.
hugs,
Claire
Such a story of the will to survive and thrive! Inspiring, and challenging. The window in though your lives gives all of us the opportunity to send our love to the three of you. Thank you. Blessings
Such a beautiful face and spirit 🙏
It’s a new love life ❤️
Many thanks for the updates and photos. So nice to see Barnaby without any attachments – all the more adorable! The StarWars face looks like a bunny rabbit face too – long wiskers, just needs rabbit ears:) Much love to you all and may the 4th continue to be with you.