Next Surgery Scheduled

Preparation has begun for Zoe's spinal fusion, which is scheduled for next Wednesday. By preparation, I mean, back to back CT scans for the last three days, and an MRI today to top it off. There may even be more in the works. I appreciate how much caution they use in preparing, but at the same time poor Zoe gets so anxious about these procedures. She puts up with so much with very little complaint. Yesterday she finally said she was tired of people coming in her room every time she was trying to fall asleep, so the nurse put a sign on Zoe's door telling all to see her first before entering. Zoe had about a three hour reprieve. It was nice while it lasted.

The word today is that she can begin having food orally rather than through her feeding tube. She has been asking for lasagna since the day after surgery. Aunt Sarah made us lasagna to take on the road before we left Portland and it was a big hit with Zoe. You're the best Sar! I think we'll start with something a little more simple...like water and jell-o though...we don't want anymore roll-ups.

In other news, nurse Karen (who rocks), and I got Zoe on the potty chair yesterday, and even had her standing with support for a moment. She is extremely weak, and top heavy with the halo, but it was definitely good for her to be upright. She did a lot of coughing and burping so I think she got some trapped secretions and air up. While getting her back in bed we had a little scare though. We heard a loud pop from Zoe's head and neck area. Karen assessed her, neuro came up and checked her, and the orthotics people came up and checked her halo as well. No change seems to have occured, but the CT for today is to make sure of that. It was no big deal to Zoe, but my heart got a work out from it. Everyone here at Harbor View is on top of everything when it comes to Zoe, so I feel really safe.

Zoe's pain seems to have increased at her wound sites in the last couple of days, which we are being told is normal. So, we are increasing her pain meds to help out with that. It's doing a number on Zoe though. Her spirits have been a little low. She doesn't know what to do with herself, and one can only watch so many movies. It's tough...I want to see her smile, but she's in charge of her feelings, not me. I read to her, try to engage her in different simple activities, and try to be silly with her. It works for a moment, or a little while if I'm lucky. I feel myself getting anxious because I don't know what to do. What used to work doesn't work anymore. I can't begin to even pretend to understand what she's going through. How can I know what to say to her? She has asked me to say the "God words" (prayers) to her, because she like to hear them. She cries when I do, and then I cry. I feel like my heart is breaking sometimes, but then I remind myself that we will get through this. There is no acceptable alternative.

I'm am so immensely grateful for so many things right now, the doctors, nurses, my step-mother, Henry, Zoe's strength, my own strength that I didn't know I had, my family, my friends, strangers, a prayer from a man I met in the hospital cafeteria, the sunshine, this blog, hot showers, people to watch when I look out the window, stupid trashy magazines to read that take my mind off this, the prayers that I say over and over in my head, and much more.

Thanks for letting me unload, because this is what this is for me...a place to unload.

Colleen