James' Heart Surgery: Day 4

A breath of fresh air:  James is back!  

What an enormous difference a single day makes!!!!  Jared called me early this morning to tell me that James was smiling, laughing, talking, and honestly-being normal.  I couldn't believe it. Yesterday was so hard, and I was so depressed the entire night-hearing that such  major change occurred overnight seemed so impossible.  I rushed getting ready and headed to the hospital only to find out Jared was right:  James was back!

He has his NG tube in of course, but it doesn't seem like he cares-he's not trying to touch it or anything, and if you ask him about it, he very carefully reaches up, taps it gently, and then leaves it alone.  He apparently threw up again last night when the overnight nurse tried oral meds again, and ended up expelling the entire tube.  Jared said having it placed again really wasn't too traumatic on him after the throwing up instance, thankfully, and even despite that, he woke up happy this morning and seeming like his usual self.  He ate a full serving of eggs for breakfast, though nothing to drink.  When I got there, he immediately wanted to play with his car toy he earned from the Child life ladies, feed Jackson fishies, put stickers on his coloring book, and sit in the couch-not his bed-and play with the tablet.  He was talking up a storm, asking to go on walks, even trying to run around the room and climb his bed.  I just could not believe the difference!

True to the charge nurse's word, we had Olga today as our day nurse.  Olga took care of James when he was here for his first open heart surgery, and she remembered him well-isn't that something!  She has a great way with kids and it was such a breath of fresh air after the last two days.  James reacts well to her, and we obviously have an established rapport with her....I can't help but think James' huge turnaround has something to do with a much more positive tone in his room, despite some setbacks that occurred last night.    James had his last breathing treatment right before sunrise today, and doesn't need those anymore.  He's really just taking 3 meds through his NG tube (and hopefully orally), and working on staying active.  The OT and PT ladies came around before I got there and deemed James perfectly fine to avoid any OT or PT therapy post release.  They had some nice things to say about me and my manner of getting James to comply with their activities the day before-that felt nice, like I was doing something right.

Jared did take off with Jackson shortly after I got there, and I proceeded to mend my relationship with James-thankfully, he didn't seem to hold any grudges, and we got in lots of good walks, books reading, tablet playtime, and car fun.  Olga told me he was due for more meds, and she was curious if I had any ideas of how to get him to take it orally. She suggested mixing it with applesauce, so we tried that with absolutely no success.  He took one bite, immediately screwed up his face, and utterly refused it thereafter.  After yesterday, I was not in the mood to hold him down and force it, so Olga administered meds through the NG tube, and assured me we would keep trying other ways.  I was a little down after that, as this is the only thing keeping him at the hospital at this point.   Olga suggested we try a chewable motrin tablet in lieu of an oral dose...that wouldn't solve the lasix problem, but I was open to trying it.

I did manage to get him to drink all of his orange juice (thickened) that he skipped from breakfast.  It was that simple feat that made me realize maybe we should try mixing his meds into OJ, which is highly concentrated and would cover up the taste. Come lunch time, we went on a walk while Olga mixed the concoction in his room.  She had it ready with his lunch tray, and I was very nonchalant about it-just put it down and told him to drink his juice.  He ate a bunch of fries and a piece of pizza, and intermittently drank his OJ.  Its funny, after the first sip, he made a face, and he said, "Its gross".  But apparently, not so much that it stopped him from drinking it, and within 5 minutes, it was all gone and he was asking for more. SUCCESS!!!!!!!!  Oh, it was such a relief to have found the answer!  I eagerly reported this milestone to Olga, in addition to another discovery-James pooped.  Doesn't sound like a big deal, but having a bowel movement can be tricky for a kid whose ribcage hurts while pushing.....that meant he wouldn't needed liquid colace, another victory.

So from that moment, we just kept climbing uphill.  James and I stayed busy all afternoon playing, and when Jared got there, I helped him get the OJ set up with dinner, and made sure James drank it before leaving-he did great.  Olga told us before heading out that as long as oral meds continued to go well overnight, we would likely be leaving tomorrow.  We feel so grateful she was our nurse today and told her we really hoped she would be with us tomorrow as well.

The best moment for me came when I was leaving for the night, as Jared had offered to stay overnight again.  I hugged and kissed James as normal, and as I was heading to the door, I heard his little voice call out, "I love you mommy!"  My heart melted.  The entire day had gone well, and I felt our relationship was repaired from the damage the previous day had caused.  But those little words just sealed it for me.  I love this little boy to pieces, he is just my sunshine when all else seems grey.  I am excited for tomorrow, excited at the prospect of taking this little guy home.

Playing with his sticker book.

This is James' favorite stop on our 5th floor walk!  He loves these picture decals this little girl in this neighboring room put up-we literally visited this room 5 or 6 times today.  If James got into a funk, all I had to do was ask him to go on a walk and visit the "scaries" with me. Pure gold.