Making Progress - April 22

I didn't make it to the hospital today - I spent the day chaperoning Little Big's field trip! When I called over to check up in you the nurse said you were an absolute angel!

You had a busy morning with PT and ST - and then spent some time working with ST and the trach nurse using your speaking valve. She said the trach nurse was thrilled with how well you tolerated it for your first time and is excited to keep working with it. The speaking valve works by turning the trach into a one-way tube. Normally you would be breathing in and out of the trach, which means air is never reaching the vocal chords with enough force to cause them to vibrate. The speaking valve doesn't allow air back out the trach; it is forced up the throat and past the vocal chords, allowing for vibration. I'm not sure what it means that you tolerated it really well since I wasn't there, but apparently you did great! Dr. G and I were curious to see how it would go since you weren't really making any noise before anyway. Hopefully we'll do some more work tomorrow.

After all the work was done they put you back up in your big chair and the nurse said between the PT and about 10 minutes of watching and smiling you were worn out so she laid you down and you went right to sleep and took a nice long nap. 

Everything is still on track for the sleep study and I'm praying you sleep as well as you have been so we can hopefully go home with as little new equipment as possible - our room is getting a little crowded! So far we're adding a suction machine and humidifier, but if we can get rid of the oxygen then that would be great. You've been sitting comfortably between 21% (room air) and 23% (about what you went home on last time) for the last week so we'll see what they think.

Hopefully, by the end of the week we'll have everything ordered and you'll be moved into a separated room so that I can come and room in with you, spend at least one night and two days doing all of your care and then they'll let us go! No definite timeline yet, but we're moving forward!

Sleep well Baby Girl - I'll see you in the morning!