Cranial expansion surgery post op day 3

It never ceases to amaze me how resilient Michelle is. Honestly I admire her. Kid has some strength and will. Not to mention a personality that literally draws you to her no matter what. She is one of those kids that you love with all you have and she loves you twice as hard.

She did great last night. Was waking me up to tell me she was wet, thirsty, hungry or uncomfortable or she needed her ice pack for her eyes. She's been eating really well today. They decided since she has been holding her own on the eating and drinking scale to discontinue her fluids so the only things we have that we use the PICC line for now are her antibiotics and her decadron which is being weaned down.

Remember how I said the drain was coming out today? Yea that didn't happen. Apparently there was A LOT of miscommunication in the Neurosurgery department today. Like in a way that her surgeon came by and talked to me, asked Michelle a ton of questions and put the order in to take the drain out that the resident needed to come do. Well he never did. As the day progressed we paged him and he didn't answer so we paged the on call NSG who said that none of them were at the hospital to remove it but someone would be there at 8 tomorrow to take it out. I am super annoyed by that and here's why, we made a HUGE effort today to prepare Michelle for it. Child life came in and told her what they were going to be doing, explained every detail to her. She was okay with it. Actually looking forward to it. And then we had to tell her that it wasn't happening today because people cannot communicate. So disappointing. 

Here's some BIG news, her eyes are beginning to open. We see a huge improvement each time we use an ice pack on her. She even touch my nose and her daddy's hat. That is a BIG step. The dr said that she has to be able to open her eyes, pass her neuro exams, eat, drink, and have the drain out. So we should be home very soon. I know he is concerned because this is Michelle and she has her own plans and schedule but I told her today that were gonna try a different one for forever. She said that was okay because she didn't want to come back to the hospital.

It has been nice though. A lot of the nurses who took care of her when she was a baby obviously haven't seen her in a while since she had some really good years where she was well, but have been stopping by and saying hi and even some of the PICU team who took care of her last time have made a point to come over or in when they are walking by. 

I almost forgot! PICU signed off on her so she is no longer on their service! So now to get neurology and neurosurgery to let us go home.