Fontan Day 7

7:30 PM Another day down.

Mary Clare had a very tough day yesterday.  She refused to take her oral pain meds, and wasn’t on IV pain medication.  She hasn’t complained at all of her chest, as I assumed. She has been having severe back pain.  We’ve ruled out several ideas, but have really not determined the exact reason.  We spoke to a surgeon on her team and he seemed to think it had to do with “entry of the chest cavity.”  Basically, how her little rib cage was ripped apart and bruised.  So she has been given Toradol, which should help if it’s muscle pain. Last night, she threw up every time her nurse tried to give her meds, so we’ve started her on meds for nausea.  Today has been better and it’s not as much of a struggle to get them down.  (She’s a stubborned little one!)   She has also learned that if she says she doesn’t hurt (even when she does), the nurses and doctors don’t touch her and she doesn’t have to take medicine, but we are getting there.  One baby step at a time.

Today, she has been awake more and has been happier.  We tried to play in the Atrium, the children’s play center.  We unplugged her, piled her into her transport wagon and wheeled her down stuffed with blankets, pillows and all of her necessary gear.  She was so excited but just couldn’t muster up enough energy to do much of anything.  She wanted to play so badly, but it was simply too painful to maneuver her little body.  We painted and walked around and stared up at the colorful kites and basked in the sunlight of the Atrium windows.  After about 20 minutes, she was frustrated and in tears, so we headed back up.  She wanted to sit quietly in her wagon for a while once we were back in our room.  The quiet, and stillness seemed to calm her.  It saddens me when I see her sitting quietly like that, just staring at the wall or into space.  She seems to know that her body needs time to heal.  She understands all of this somehow.

She also ate for the first time tonight.  Cheese pizza!  She just hasn’t had an appetite at all.  Not even the bag full of pink candy from Uncle Robert enticed her.  As I type this, she is watching Tangled for the second time today and I’m hoping and praying that she will go to the potty.  If not, at 8PM, they have to catheterize her.  Although we seem to be having a few bumps in the road, she has amazed me with her determination and stamina.  She is such an amazing little girl.

10:00 PM So, Mary Clare and Mel are in bed watching Tangled for the third time today and guess what?  MC went to the potty.  (She decided to go just as the nurse was walking down the hall with her catheterization “tools” ready to get started.  Nurse Kyra smiled when she heard the news and gladly returned them. We all cheered and “high fived” Ariel. Definitely a great ending to our day!  Mary Clare has also been taking her oral meds like a champ.  (Well not quite like a champ, but we’re getting them-and keeping them-down-so that means she’s a champ in our book.) Goals for  MC tomorrow:  taking another trip to the Atrium (actually nurses orders-the movement helps keep the fluid moving), talking all oral meds, going to the potty and eating a little more.  Baby steps.  I’ll probably need help remembering baby steps when we try to get our three-year-old back to “normal” when we get home.  I have a feeling it may take baby steps to reverse the effects of all of this attention “Ariel” is receiving, but she deserves every single bit of it!

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