October 23, 2018

Y’all, this was SO my child today as she had to be sedated in order to change the tape on her tube. This child fought MULTIPLE sedation boosts (BOLUS) and had to be given a different medicine to knock her stubborn butt out. She would continuously open her eyes wide and shake her head “no” when I told her to go to sleep. We couldn’t help but laugh as she fought it. I swear, she gets that stubbornness from her daddy!

In other news, her neurologist told us her MRI looked better than the first one taken during our first week here. It appears the inflammation is going down but there is still a bit in her thoracic region. He is tossing around the idea of doing another IVIG round next week.

We are hoping the tube will come out in the next few days. They are going to exercise her lungs a bit tomorrow. Dr. Sanchez attempted to test her today but instead traumatized her. Like, ya gotta warn lil’ sis here when you’re about to abruptly remove the tube connector. I think he learned his lesson real quick, or at least I hope so. Our sweet girl is honestly going to have some PTSD from her respiratory treatments here and I don’t blame her.

Thank you for your continued support. I haven’t updated much during the last few days because we have spent a lot of time at her beck and call. She is getting very tired of being here and cried today when she saw a Chuck E Cheese commercial. I know she is so ready to go home and growing more and more frustrated at her inability to do everything as she once did. I am still trusting and believing God to fully heal my baby girl. I ask that you continue to pray for the same.