The James Journey: Day 3

I am working on a Day 2 post, but its a work in progress as yesterday was an emotional day (the good kind). 

Today was probably James' best day in terms of stability.  All of his levels and numbers were normal and never veered from that.  He was much calmer today, having been on his nutrition IVs for a full day.  I don't think he is content with not physically eating, but I do think his body is more satisfied-thank heavens.  I understand why he can't eat before surgery.  The doctors want him to avoid bowel issues before surgery, and eating might change his blood flow needs.  However, I can't help but wonder if this is the best condition for him to be entering a very serious surgery.  Thus, I am glad to see the IVs helping his demeanor so much-it must be doing the same for his overall health.

James' bilirubin levels are now back to normal as well, so no need for phototherapy.  He had an EKG today that was the beginning of operation prep work.  He'll have another one tomorrow actually-the doctors needed another set of info apparently on specific elements of the EKG.  I started stringing together James' beads of courage today.  Its a program the hospital uses to celebrate each major hurdle in this experience for James.  I love it because it keeps things so positive and hopeful, and that's been huge lately.  Each bead represents something James has done here at PCH:  tests, IVs, surgeries, ambulence rides.  My favorite bead is the anchor bead.  It came with a little note that talks about how family, friends, and the hospital staff are the "anchors" in James' journey, and that the support that comes from those people is key to his success and recovery...the love and compassion that comes from those people build the anchor from which James will draw his strength.  What a perfect sentiment for the support we have felt from our family, friends, co-workers, hospital staff, and perfect strangers! 

Jared came to visit today with all the kids.  We definitely wanted them to see James before surgery and since RSV restrictions are starting, we needed to bring them today.  We knew they couldn't be here long, given how many cords and machines are in use around James bed!  However, we also knew we wanted the kids to connect with James before surgery.  The kids just love James! Karianna and JD really wanted to hold him but understood that wasn't possible.  They were content to stand on a stool and protectively guard James in his little bed.  Both Jordan and Sara stared at James, and it seemed they were surprised he was still around!  Sara kept pointing at James and saying "That baby jane?"  I kept telling her yes, and she would giggle and say "Oh!" before trying to touch every body part of his!  Jordan understands the situation more perfectly and simply than anyone.  He will explain that James' heart is broken and the doctors are fixing it so it doesn't die.  It makes me tear up to hear him say that because of the simple truth in his words.  BUt every prayer we say is focused on trusting the Lord and thanking him for making James an eternal part of our family.  He is such a fighter and his spirit is strong.

James also got some friends to hang out with today!  Pro Flowers came to the hospital and gave him a bear that was donated.  The doners who dropped it off were so wonderful-taking a few minutes to talk with me and get to know James and his situation. Even though James is so young and won't recognize this as a toy, the spirit it brought to the room was amazing. Later on in the day, more volunteers came in to donate a second teddy bear.  This one came with a doner card that specifically said who donated it.  Thank you to the Healy family, whereever you are.  Your donation touched my heart and reminded me that the love of strangers speaks volumes.  I call the teddy bears James' "Guardian Bears"!

Overall a great day!  I got to hold James for quite some time today and relished the chance to hold him close to my heart, stroke his skin, and remind him that this trial will pass and he was forever safe in my arms.  I had a few hard moments tonite as I considered he will be having major surgery in one day.  I wasn't necessarily trying to extend that frightening thought, and I wasn't trying to make it frightenining.  But I couldn't help tracing a line over his little chest and feeling his tiny heart beating under his rib cage....and wondering at how James will endure surgery.  It was hard for me to imagine his otherwise perfect body needing to be cut open.  You wouldn't know just looking at him that anything was even remotely wrong with his heart!  A very selfish part of me wants to just take him home and pretend this isn't happening.  But it is, and for now, I have to trust that the Lord is in control and has provided us with amazing doctors and resources to fix this problem and complete his journey on earth.  It doesn't mean though that my spirit doesn't cry for my little boy.  If I could do this for him, I would in a heartbeat. 

We move forward into his last day pre surgery tomorrow.  I plan to hold James a ton during the day, whisper words of love and peace to him at every moment possible, and utter prayers in every free moment...of course, there will always be a prayer in my heart as well.