success.

It's been one week since our impromptu sleep study. This was a no frills sleep trial - nothing additional monitoring other than a pulse ox, heart rate monitor, and what is called a t-Com (which measures his co2 output).

He passed his test. It wasn't without a couple of difficult moments - but he passed. We learned that he had a small bout of tracheitis - which is inflammation of his trachea. It is super common in people with trachs, and we have been blessed to only have encountered it this time and one other time in PICU. He is recovering well and the infection is clearing up.

We are now working on officially weaning the vent at home at night. It will not be an all or nothing approach - it will be 1 night on, and then a night off. Since he has been used to this support for 7 months now, we have to bring him down slowly. But he is getting better every day. He is stronger every day.

We will start using his Passy Muir Valve again once we are sure the inflammation in his trachea is gone and start working towards that again. So many things for Gideon and he is just doing so well.

Next up is just working on this weaning, working on his valve, and keeping him healthy and strong for surgery in 5 weeks!

We did have an off-schedule trach change this week. We did his usual trach change Monday - and it was almost immediately that we heard something in his trach. It was assumed that he just had some more secretions than normal, but it persisted through Tuesday, and Wednesday morning. Yesterday morning it just sounded off around his trach and he couldn't clear whatever was in there. So we did our off-schedule trach change and that cleared everything up. When our nurse cleaned it, there was something stuck in there! Usually we can get everything out with suctioning, but somehow this was stuck in there. Crazy times - and the fear that syncs in when we hear something and don't know what is going on and why we can' get whatever is out the normal ways from his trach.

We ended Wednesday with a little pool time and Gideon enjoyed his time on the float. He loves being outside so much and this was another wonderful experience for him. He dipped his toes in a little bit, but mostly he got to lay and sit on the float and worked on his balance.

Gideon has also learned to "stomp his feet". He raises his legs up and drops them on the ground so hard and it is hilarious to watch. He also will kick his legs even more when he is hungry