Aidan was in and out of sleep today. As much as the nurses were sweet to him and spoke to him, Aidan was never what you’d call “with us.” His pain meds are doing their thing and Aidan wasn’t engaging at all with me. He’s a tummy sleeper and the hospital is busy and noisy so he really couldn’t settle in to a comfy sleep. He ran a little temp all day which was to be expected. I was able to figure out his pattern; Aidan will have a little seizure which jacks up his heart rate and makes him wiggle enough to wake up and be frustrated that he’s not asleep. Then he’ll settle down and do it again. I’m taking really good notes for next time. A high heart rate after anesthesia is one of those things we now categorize as ‘that’s just Aidan” since it’s not accompanied by low blood pressure. When I left him this evening we were able to get him into a more comfortable position and give him some Tylenol to help all the other goodies in his system.
All in all, Aidan is doing exactly what he’s supposed to do. For me, it seemed like a busy day. Lots of doctors stopped in to say that Aidan looks great. A PT stopped by to order his wheelchair from home. Later we saw a case manager who said now we need to figure out how to get the wheelchair from Maine to Boston. Um, really? I filled out a ginormous questionnaire for a study on families and kids and something something. I got to give Dr. Hip a duct tape bow tie and it had nothing to do with me being from Maine. It was a special craft I made with the HOP specialist because I’m so crafty. He loved it. I read and got frustrated at the lack of internet connectivity and my brain was too mushy to write even though I still really want to tell you the story about our first moment seeing Aidan. I also tried desperately to give Aidan water like a baby bird. His lips were so dry and I’m sure he wasn’t comfortable. I took a straw and put two drops of water on his lips. He was having none of it. He turned his head away even though I know he was thirsty. There are no worries for dehydration because he’s getting IV fluids.
The best part of the day was that I got to have dinner with another Medical Mom and a snug with her beautiful baby boy. A real life friend is actually on the next floor above us. It’s a weird alternate reality we live in that I could see a Mainer at Boston Children’s and think it’s great. We had a wonderful visit talking short hand and just getting each other and oh my gosh her boy is adorable and was all giggles with me.
I also took a cab for the first time today all by my very self. Look at me all grown up. I also probably wrote too many run on sentences and am not even going to proof read this post because a long day of sitting around is really really exhausting.
Must sleep now. Tomorrow is a big day. Thank-you for all of your continued notes of encouragement and laughter.