Doctors are having difficulty solving some things for Sicily. Thank you for your prayers.
MONDAY, DECEMBER 08, 2008 01:30 PM, CST
I wish I could report that things have changed, but there really hasn't been much since last night. We had a decent night, only real complaint is her little cough that kept her up a bit, but all and all, we did okay.
I have come to the conclusion that our daughter is a walking medical mystery. Shall we examine the facts? Right now, Sicily seems fine, acts fine, doesn't complain of any sort of pain, yet one of her pancreatic enzymes is, as the GI doctor put it, at an impressive level...and I don't think she is being complimentary when she said it.
This would typically indicate a case of pancreatitis. But upon a physical examination, Sicily is experiencing no pain when her abdomen is gently pushed on. She's not throwing up the water, gatorade, green popsicle or three bites of jello I've been able to get in her.
By the way, I'm laughing at the thought of Sicily even considering consuming the food and beverages that have been brought to her room...she doesn't consume most of these things on a good day at home. There is little chance of me getting her to eat and getting out of here if it's all based on the contents of the tray that sits untouched before me. But that's a whole other chapter.
The doctors are a little stumped with the current mystery. But again, I remind them that she appears to be the exception to the rules when it comes to medical issues. I'm still trying to figure out how Sicily's right kidney came back with an unfavorable histology when we had a substantial shrinkage with the first six week round of chemo.
We were told that kidneys with anaplasia don't usually (usually!!!) respond well to chemo, and we were on a somewhat mild protocol, mild that is, compared to others. Her little body did some surprising (not good surprising) things during the first surgical recovery, and now still continues to baffle the experts.
I've cried a lot this morning, out of desperation, but I am doing better. Again, my favorite people in the world right now, the nurses, are always here and I am forever thankful. We had a couple of wonderful nurses over the weekend, Terri during the day and Megan at night that we felt would do anything for us. They are so amazing. Today our nurse is Debbie, and she hugged me and held me this morning when she came into the room and found me crying. She's been so supportive!
We are now waiting to hear if we will go through with a couple of tests the GI doctor recommended they might want to try. It's up to our surgeon on what to do next. Patrick and I discussed if this is a "sit around and watch" type of scenario, we might try to get transferred to the St. Francis Children's Hospital in Tulsa just so we can be closer to home and our other three children, who need a bit of normalcy returned, even if just a small bit.
It would make things a little easier, but it still woudn't be the same as going home. Having spent twenty days inpatient in the hospital and having no idea how much longer we will have to be here has definitely worn me down. But looking into my beautiful daughters eyes and seeing her actually smile and tell me she loves me today rebuilds my resolve and allows me to continue on. I would still do much better if I could sleep in my own bed, bathe in my own bathroom and cook my own meals! Hopefully soon!