Thursday Morning - A Josiah Update

Hi Guys

So, at 1 AM last night Josiah self-extubated again. The doctor who was on wasn't able to re-intubate him with his current tube (3.5 mm cuffed) so Josiah is now on a smaller one (3.0 mm cuffed). Obviously this is a concern to the doctors because essentially he is breathing through a smaller 'straw' (less oxygen getting into the lungs) and it's easier for Josiah to self-extubate again. With this smaller tube Josiah also has a greater 'leak' (he can move air up and down around his breathing tube) which isn't great because again, it demonstrates that it is easier for him to self-extubate.

BUT despite that concern, I was able to find some beauty in this: for the first time in probably six weeks we have heard Josiah's voice. Josiah is quite audible with his leak, and he's back to snoring again when he sleeps deep (something we haven't really heard much with his 3.5 mm cuffed tube), and when he cries and coughs you can actually hear him and isn't silent! Again, not a good thing but still beautiful and comforting to a parent.

So, we are waiting to see what the doctors want to do next. Obviously we are concerned with how this affects his timeline (ie. the planned trial extubation for April 25) and what steps they want to take over the next couple of days (for example, re-intubate him with a 3.5 mm tube and/or give him another 'bronche' scope to see if Josiah incurred any damage with his self-ex/intubation last night).

Josiah seems to be settling alright, but the doctors are willing to sedate him in case his is still irrated by the self-ex/intubation. It seems right now that he is unable to have a comfortable awake periods, which may be because of the smaller tube or post-intubation irritation. Thankfully, Josiah is getting very little secretions because of the smaller tube so a re-intubation of a 3.5 mm tube may go easier because there is less blockage and hopefully a narrower tube won't be irritating his trachea as much (allowing the swelling to go down).

Marie and I are doing as fine as we possibly can. We are pretty emotional raw right now, but holding together. Josiah is mostly peaceful right now (enjoying his breakfast and looking great in his yellow pj's). This one hit Marie harder than I this time, but that's how God made us. Next it'll probably be me who is the most emotionally overwhelmed. I know Marie is most frustated with last night's doctor's inability to intubate Josiah with a 3.5 mm cuffed tube. Previously the doctor we like (one of the many reasons we like him!) was able to intubate Josiah successfully twice on his first attempt.

Anyways, I'm sure we'll be posting more info throughout the day. Thank you so much for your prayers, especially for those who may have been praying for our Josiah throughout the evening. God is good and in control and loves us greatly.
- Andrew, Marie & Josiah