Today's Big HOPE: To be off the breathing tube and breathing beautifully and well all by herself.
So, we are watching Gwen now. She is off the paralyzing meds (as of Sundayish). Last night they took her off the sedation and took out the tube that helped drain the area around the heart and took off the gauze over her scar.
Today they are hoping she gets "annoyed enough" so they can take out her breathing tube (she needs to be a little more awake, in other words, before they will take it out).
She has these little crying spells, very quick, then she settles again. Because of the breathing tube there is no sound. It is so hard to watch her face and know she is crying. We are trying to sooth her. She just seems agitated today...but I suppose that is expected since she is off the sedation.
Her eyes are mostly shut, but every now and again we see two very groggy, big blue eyes peer out - a first really since before surgery. But, I know she is still out of it, so what those eyes see and her mind thinks I cannot imagine. She has no frame of reference to pull from besides the two days of life out here before going under for surgery.
So, what is "annoyed enough" that will cue the doctors to take out her breathing tube? We thought her little bouts of crying spells were moving her in the right direction. However, as it turns out, she needs to be grabbing the breathing tube. So that's what we are watching for as my heart aches with each spell that I can't really do anything about. Come on Gwen - get mad and grab the tube!!!
They will take it out IF she doesn't have a lot of swelling in her trachea. It will have to stay in otherwise and await steroids to get the swelling down. It is not great for it to be in longer, it is not so great to be on steroids because they can hinder healing. As is EVERYTHING in this process it is a delicate balance of risk benefit.
We'll talk to the hematologist today. Her white blood cells were lower today, however, as we understand at the moment they would expect that after surgery. We still believe we are, thankfully, very thankfully, out of the woods in that regard, but it will be wonderful to hear it from the hematologist.
I miss my Lillian. I don't see her much at all, and it's hard to say "goodnight, I'll see you tomorrow when you come to visit me, okay?" Lillian however, is doing very, very well and I'm so glad. My mom and Myers' mom and Aunt Becca are all taking such good care of her.
Myers' and I settled into the Ronald McDonald house last night - that place is amazing - and I was overwhelmed to know that it was there for us, for us who are walking in a haze, far apart for the real word with heavy hearts. We have a comfortable room, we have dinner cooked for us, and best of all, Lillian could not have been more excited with all the play things and other children to play with. She didn't want to leave last night (she stays with Grammy and Aunt Becca at the apartment - which really works out well - as we can be on or own schedule even as I would love for her to stay with us at night).
Thank you for lifting our spirits with your prayer and comments. I have little time to get to the computer these days, so please know, even as I simply cannot respond to everyone, we here and we appreciate all your notes and care!