The team met and changed Abby's cpap settings. This means she won't be weaning off of it as quickly as we had hoped, but she is breathing much more comfortably and a repeat chest X-Ray looked better. They are also giving her a diuretic to get the fluid off. The team is pleased with how she has improved with the changes, so I think we are going to stay on this path for a while.
Sadly, the pressure from the cpap makes it really hard to talk. It's forcing all this air into her lungs and she is having to push against it to say anything. It's kind of like walking into the wind in a hurricane-pretty hard and exhausting! The only thing she has said all day is her name once during therapy, but she is responding to yes/no questions and doing what we ask her to do, so it's not like it was last time.
OT came this afternoon to talk with us about modifications for home and work with her a bit. She got Abby to sit up for a few minutes on the edge of the bed, which was great! Unfortunately, the movement and pain caused her to get sick. :(. She's on Zofran around the clock, but she has gotten sick twice so far anyway. They have not started feeds yet because of it, and Abby has only had a few sips of Apple juice since getting the cpap (again, it's really hard to swallow when air is being forced down your throat!)
I met another veptr mom today whose daughter has been here for 11 weeks with a very serious lipung infection. She's doing better, but still hanging out in the woods! The little boy we met at rmh is still in a ton of pain post-op. His mom and I were messaging back and forth at 3 am! It's great to have some support here. Our kids are SO strong!!!!
As usual, all of the doctors and nurses have been awesome! We have had a great nurse, Noah, the last 2 days who never stops! The compassion they all have is awesome. Of course, we did have Joe Resident throw on all of the lights at 5 am and then later ask if she had ever had anesthesia before...as he looked at her gtube...and jaw scars...and trach scar...lol! Gotta love the residents! Seriously though, the whole team has really listened to us and done things based on how Abby has responded in the past. I love that they bypassed morphine and went straight to dilaudid because I told them it makes her sick and doesn't work well enough anyway. The care has been top notch. We are grateful for awesome care in both of our hospitals!
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