Fontan Day 6: June 5, 9:30 pm (Chyllous)

Caden continues to get a little stronger each day.  He is talking a bit more and itching his hands and feet asking for cream (for his eczema) now I know our boy is starting to return!!  He went on a couple of great walks which also included one of our favorite nurses Suzie. We even took the wagon outside to enjoy the beautiful sunshine.  Caden still needs frequent breaks where he leans on daddy and supports himself to regain his strength.  I watch him and it really is amazing how strong he is and far he has come in just a few days.  I love how determined he is at playing hide and seek with farm animals up and down the halls with nurse Suzie.  Turning this into a fun little way to encourage him to walk.  Caden's appetite hasn't really returned yet, just consuming a vanilla boost (since we can no longer give pediasure because it has too much fat), and a small serving of spagettios which he didn't keep down.  The dietician met with us today to go over Caden's new diet for 6 weeks.  All I can say is feeding a toddler 3 grams or less of fat really stinks.   Physical Therapy also came to work with Caden to again help get him out of bed and encourage movement which at times Caden is resistant against saying he wants to just lay in bed.  So, all in all we have had a good day.  I realize David is exhausted as he is the one staying in the hospital with Caden at his bedside.  Since last night consisted of multiple people entering the room trying to find a line, lots of crying, consoling etc it makes for even longer days for him.  Anyone who has experienecd hospital life realizes there isn't such a thing as sleep in the hospital no matter what they provide for comfort for family members.  I am so blessed to have a wonderful husband who looks after our boy at night while I can sleep so I can try to be there for him during the day. I love him so much - Thanks David.  Each day emotionally is so draining too.   We witness some really hard things each day that really make us stop and think about our life, our boy, and our blessings.  We have families on our floor waiting for hearts, families who have lost their child, and families going down the same path we are.  I'm fortunate to have David to lean on. He provides that hug, the right words, or the comic relief, to get me to a better place mentally.   I am also very thankful we saw a few smiles today (thanks to all our prayers they are working).  It really is amazing how a smile can make your day.  The only prayer request is to pray for now for Caden is good news for Caden's drainage tubes at rounds tomorrow morning.  This afternoon Caden started to show a milky, white, creamy color out of his tubes indicating chyllous.  I just ask for prayers for good news to continue with Caden's progress so far, and the chyllous is under control so we are able to take the tubes out.  The doctor plans on checking Caden around 2am for  his chyllous status to see what the next course of action will be.

Again, thanks to all of you for your love and support.
Love Melissa and David

  Going for a litte walk to get stronger…..

  Fresh air and sunshine

  Wonderful Nurse Suzie and our boy!