Recuperating

Well, we made it through the first post-op day after the second surgery without any major incidents yesterday. As with the first surgery, Ella is sedate and sleeping a lot. She's been nauseated a couple of times and hasn't even had a sip of water, though she still agrees to take her oral meds--her continued compliance with this astounds me every time. That combined with her sweet nature and her stable vital signs earned her the label of "the best 3-year-old crani patient I've ever had" from the night shift PICU nurse.

When she is awake, Ella's eyes seem a bit vacant, but I know that she understands some things because she is responding appropriately. She was a little less than thrilled to be touched or kissed yesterday, so I had to love her from afar. It seems like she is not feeling so put-offish this morning; I already got more kisses in 5 minutes than I did all day yesterday.

We made it to a regular room right at shift change last night, just as my husband predicted and approximately 9 hours after the transfer orders were put in. I so wished it would have happened quicker. It was a frustrating day for me, just with the back and forth I had to do to keep Corie on her very frequent breastfeeding schedule while trying to check on my big girl in ICU, where babies are not allowed. Ella's entourage of me and Chris, my parents, and my mom's sister Leslie were able to manage, even during the hour-long, twice daily lock out of the family waiting area for cleaning purposes where we were relegated to wait for her transfer. (I don't want to sound complain-y, but this is a very family-unfriendly policy)

Ella doesn't want to eat, she doesn't want to watch "Doob" (scooby doo), and I can't really lay next to her, so almost all of my go-to methods of comfort are out. She did seem to be interested in playing on my phone, but then mostly just watched as I did the work of playing.

Ella has not said any words yet, and, while part of that is just the nature of being sedated and sleepy, I also know that it is a result of the specific type of brain surgery that she had. The doctors were clear that they would be removing her primary speech center (in the left parietal lobe) because it was very involved in her seizures. They said that she would lose the ability to speak temporarily but stressed that it would come back as her right brain takes over. It's anyone's guess how soon that will happen. A few parents who've gone through this told me it was about a week before they heard even one word from their children. This seems unbearably long to me. My heart aches to hear her sweet voice again. I kinda hope that she doesn't notice that she can't talk so she won't freak out and that we find other ways of communicating in the mean time.

The support from friends and family during this hospitalization has blown me away. I am stayed by your prayers and humbled that so many people care about my girl's welfare. She's pretty special to me, and I am glad I get to share her with you.

♦