Understandably, Scout is in a lot of pain. We are trying to stay on top of that. We are trying to give her the most restful day as possible. Keeping the room quiet and florescent lighting free. She’s the most disturbed when the doctors or nurses come in to get her vitals or check on her. Luckily, the staff listens to us and are great about trying to be the least invasive possible. Timing all meds and vitals together so that we keep the disturbances to a minimum. When we do have to mess with her, she is speaking coherently and directly “don’t touch me”, “I just want to lay down”, “I just want to hold your hand mommy”. We even thought she had finally fallen asleep and she said “I hear a baby crying”, who was in another room. So we know that she is very aware of her surroundings. We are thankful that she is very much cognitive right now and communicating with us.
She doesn’t want to open her eyes. They are very swollen today. The more she opens them, the faster they will heal. We have tried a couple of things to coax her to do so, but alas, she is not ready. She is on IV fluids because she really isn’t in the mood to take anything by mouth yet. But we are hopeful and expect that all of these things will change in the next couple of days.
Her ophthalmologist came in this morning and said he was thinking about her procedure last night. I think he needed a little time to process what he did the day before. He said he had never seen anything like her eyes when he got to the dissection and repair yesterday. I didn’t say it, but I was all ,’That’s what we’ve been trying to tell you’. But here’s the deal. The large majority of the medical community knows very little about Loeys-Dietz Syndrome. So even great and skilled surgeons at great hospitals are just starting to figure this stuff out once they get in there and take a look at the insides of these folks. They are physically very delicate creatures. But their resolve and will is stronger than…let’s go ahead and say for Scout’s sake…a lion.
Thank you for your continued prayers. So far we see no signs of infection or respiratory distress. Please pray for great healing today, for good rest, and no complications to rear their ugly little heads. And Thank God for what he has done so far. Thank God for the good things in your life. I promise you that focusing on the blessings you have will do your body and mind way more of a service than dwelling on the negatives. Life is a gift. Go get some sun, get off of facebook, don’t watch the news, do one of those pintrest projects you pinned, hug your people, write a note to someone whose been on your heart. Get unplugged today and go live that life you’ve been given.