The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis.
Over the past few days, Annadelle has been experiencing pretty severe pain from excessive gas. We have been having to pull air from her NG tube at an alarming rate. At times the nurses can’t keep up with as much air is filling in her belly.
Dr. Merritt believes this is due to her being in the vent, being so awake, being extremely anxious and swallowing air. Each day it has gotten worse and worse, so she has been slowly weened down on the vent. She is at a relatively low PEEP setting right now and is breathing okay. Hopefully she will do well on a quick pressure support trial tonight. If she does, we will discuss removing the tube on Thursday to see how she does. They had discussed a possibility of removing it tomorrow afternoon, but I asked for them to wait until Thursday morning so she could have somewhat of a good Halloween. Halloween is one of her favorite times of the year and she is very sad she can’t go to any fall festivals or trick or treat.
Her Pawpaw Brian Selke found her iPhone (my old iPhone 4) and we connected my Apple ID to it so she can FaceTime. She has called several of our family members and that is helping her spirits a bit.
Please say some hard prayers for my baby girl as I know she is so ready to go home! As are we! Today marks 30 days in the PICU.