Today Grace got a PICC line inserted into her arm (3rd time this year) to receive nutrition. The doctor still wants to up her calories, so we will continue half the formula as well, hoping to get her weight up before the surgery, which is yet to be set but will be in a "few weeks".
Every morning since Tuesday Grace has had a fever when she wakes up. It only lasts a few hours then goes away. Fevers aren't too much of a concern because we know they are just her body fighting the inflammation, as all other infections have been ruled out.
We have been told we will be here through the weekend so we look forward to Monday with realistic hopes, knowing we won't really know we're headed home until a few hours just before we actually are.
From my last post I think some may have assumed I am frustrated or discouraged. That was my sarcasm coming through, I suppose. Truly, I'm more at peace and feeling God's presence more than ever before. We've come to know this disease pretty well this year. I've done tons of research and reading. We're not dealing with a sprint here, but a marathon. I'm not frustrated at our doctors for not finding a cure because there isn't one. Yes I get frustrated with all the new faces that come in not knowing details of our situation before they come in, but I also understand this is a teaching hospital and can deal with it. I'm not one to sugar coat my feelings. What you see is what you get and in certain times of life it comes with salt and pepper and even onion salt, leaving a terrible taste in your mouth but necessary in certain seasons of life. (See what I did there?) I'm teaching my daughter to tell the nurses what she needs when she needs it, to stand up for herself and speak truth because truth be told, it isn't easy for any 13 year old girl to talk about her poop, but that's what we do. We talk about poop. We talk about it every day several times a day, and at first it was hard to spill the details, but that's life. Life contains poop. (There's a sentence I don't type every day but you know it's true.) Sometimes it's better to just accept that and put on your boots and trudge through it. We need to be open to share this because it makes us relatable. We need to be able to laugh about the way God made us, because…well, haven't you read the book? Everyone Poops.
Everyone needs this book. I might give it as Christmas gifts this year. Act surprised!
Bottom line: (haha) Grace's story is playing out one day at a time here in 2013. She's a bright light in this hospital and to a team of many doctors that deal with poop all day long. She's taking what they give her, and throwing it right back if she needs to…. I love that about her! God is so good to give us a sense of humor. I can't wait to meet Him in person because you know He's the funniest being around. Who do you think created poop and the holes it comes out of?
Well that certainly escalated quickly. I have no idea how to end this now. I can't even think of a title. Maybe it should be….Potty Talk or Doody Duty or Turd Words or Blog on a Log…*cringing*….. no…I think I'll let you choose your favorite.
Did I mention Grace has been decorating mugs? :)
