Tuesday morning update

Yesterday was a big day for Emma Kate- they took her off her paralytic drug again to assess how she breathes spontaneously in order to work anesthesia for her bronchoscopy. We were hoping they would be able to get deep into her bronchi to suction out some mucous and clear plugs if any, as well as assess the repair site. We didn't get quite the news we wanted- they were unable to get the scope with the suction past the repair site, but they did get a little bit of mucous suctioned out above it. They got in deeper with a smaller scope and feel that the repair is secure but not firm enough to be functional. The lower area is mostly collapsing on exhalation, which is why we see such an effort from her when she's breathing on her own. Her numbers are still pretty good, and she is actually able to clear her lungs of CO2, which is great. Unfortunately though, we're going to be sitting tight until another week goes by, then she'll be reassessed by bronchoscopy.

So for now, she's just sedated with the ventilator, and she moves quite a bit. She's squeezing fingers, moving legs, shifting her body and head, and chewing/working on the ET. She is able to try to cough, which is good to help mobilize debris and mucous hopefully up high enough to get it with the ET suction catheter, but it's so hard to watch. She has to be very carefully watched to make sure she doesn't move so much that she could shift the ET and dislodge it or cause damage to her airway with it. So far she's doing well with it, and we're encouraged that the body movement is going to help prevent a lot of other potential complications, and it does seem to be reducing some of her "puffiness." We have to be extra cautious at this point to watch for any secondary infection- being in the PICU as long as she will be is a big risk for infection. We're hoping to be able to remove her urinary catheter and the abdominal drain, and there has been some talk of putting in a pic line so that we can remove her external catheters and reduce risk of them getting infected as well. It's going to be a long hard week just sitting where we are without much change.