Day 14: Macy's Journey with the Rex Shunt

I can't believe it's been 2 weeks!  It really seems like much longer.  It seems like forever since we've seen our home, slept in our own beds, seen our pets, ate dinner as a family at the table, etc.  It hurts!  We miss out normal lives so much!

Last night I walked down to the family room on our floor to get my water bottle refilled, and as I walked I saw so many parents.  Parents who were so exhausted they didn't have one once of energy left in them.  Parents sitting next to their child's hospital bed holding their hands because their child is in pain.  Parents eating their evening meal off a hospital tray because they won't leave their child's side.  Parents walking down the halls just to get out of the room for just a moment.  Parents staring out the windows at the end of the hallway praying that they can breathe that fresh air again soon.  Parents trying to entertain their crying or angry child in order to take their minds off of their realities.  Parents who are on the phone talking with their loved ones who they haven't seen, touched, or hugged in weeks.  My first thought was to feel so sorry for them.  It is so hard to see people going through the hardest times of their lives.  I thought "Oh these poor parents!"  And then I thought, "Wait, I am one of those parents."  Yes I am.  I am running out of energy.  I am counting breaths for Macy as she breaths through the pain.  I am eating my meals on the couch or chair next to her bed.  I take 2-3 hallway walks a day just to escape the room for a few minutes and move my body.  I stare at the world out the windows going on without us.  I pray I can breathe fresh air again soon!  I try to do silly things and play games with Macy because she is downright angry and depressed.  I Facetime with McKenna and Jeremy every day, but it's just not enough.  I am one of those parents.  The one things that all of us parents here know, is that we are all in this together.  We've given each other sympathetic pats on the pack and that look that let's each other know that we understand.  We also cheer and clap when we see that a kiddo on our floor is going home!  We'll all get their eventually, but sometimes it just feels so far away.

Macy is doing pretty good overall.  Today, at rounds the surgery team checked her incision, and it looked great.  She has stopped draining!!!!  It's amazing!  She had so much coming out over the last few days, that I was really worried that it wouldn't stop.  They also turned off her TPN.  She was able to unhook from the IV pole all together.  She still has an IV in her arm just in case they need access.  We took her oxygen off at 9:40 a.m. this morning, and she hasn't been back on since.  We will see how she does tonight while sleeping.  She has to keep her level above 90, or else she has to go back on.  Macy walked a total of 4 times today. Her walks aren't long, and they really wear her out, but she's doing it!  We played a mean game of Uno with Grandma.  Macy won the final game!  She is still doing nebs every 4 hours and the acapella breathing following.  She still is getting lots of mucus collecting in her throat area, and is having a hard time clearing because it hurts so bad to cough.  It also hurts her to sneeze and yawn.  I can't only imagine how bad it hurts.

She is mainly on Tylenol to control her pain, but did take one oxy last night to help while sleeping.  She took another one tonight.  I am hoping that we can transition her to a pain medicine that is a little less potent tomorrow.  I think that during the last liver surgery she had she took Tylenol with Codeine once we were getting closer to going home.  We are still working on getting her Coumadin levels correct.  It was a little low when checked this morning during labs, so they increased her dose.  So, how close are we to going home?   Well, her incision is no longer draining!  She is off of TPN!  She went without oxygen all day!  I would think we are pretty close.  Like I said, she needs to make it all night without oxygen.  I think we also need to transition her completely off of the oxy.  I would love to leave tomorrow.......we'll see what they say during rounds in the morning.  I don't want to get our hopes up, so I am trying not to speculate what might happen.

Please pray for a great night of breathing and sleeping with no pain and no oxygen.  Please pray that her incision continues to stay dry.  Please pray that we can come up with a plan to control Macy's pain when we are discharged.  Thank for all of your prayers and support!  Each and every comment you write is read and appreciated!