End of the Week in Pictures

Here are a few pictures from the rest of our week…

We strung all of Keegan’s Beads of Courage before being discharged on Tuesday.  We weighed them before we left – a hair shy of 3 pounds!!  Some of the most prevalent ones were yellow (each day inpatient), rainbow (therapy visits), black (“pokes”), green (TPN or dialysis), jade (tests/scans), and blue (clinic visits).  There are plenty others though.  The big red heart is for his transplant, & the small heart for his open heart surgery; the fimo beads between the letters of his name are for each day on ECMO.  Like I said before, the only bead he doesn’t qualify for was the LVAD (and thankfully so!).  I’m working on a way to display them in his room and will post more about them later.  Gray and I honestly thought this would be something he wouldn’t “get” until he was older, but he uses them almost like worry stones, especially the beads with the letters of his name.  He holds them and rubs them…he “gets” it on a completely different level, I suppose.

Watching GooGoos (Curious George) the first morning home.

The bag on the left is TPN or IV nutrition; the two on the right are for his tube feeds (one holds formula; the other is a relief bag in case he stops processing the formula through his tube).

He picked out the lion IV pole pal over a car or train.  It has a heart for a nose.  😉

This liittle gal is finally home where she belongs, and we couldn’t be happier. 

She had tons of fun with Mamie & Big Daddy, but we sure did miss her!

Audrey turned six months old while Keegan was inpatient!  Hap Birt to you, Audrey! (That’s a half of a happy birthday, in case you were wondering).

Mamie took her for her 6-mo appointment, and she’s still an itsy bitsy thing – only in the 14th percentile for weight and 20-something percentile for height.  But her noggin is in the 60th!  She’s a smartie!

Enjoying some playtime right before their bath while Keegan was disconnected from his pumps for a minute.  Bubba and Sissy, back together again!

Keegan is still scheduled for his day-admit on Wednesday to be weighed, labs drawn, port reaccessed, meet with GI, get his breathing treatment, and have his IV infusion of the new immunosuppressant drug.  And of course, anything else that may be needed based on labs or clinical appearance.  We are hoping that he might be able to stop his TPN and start eating again after this meeting.  However, his GI symptoms are throwing us for a little loop at the moment.  We have contacted his GI doctor and will touch base in the morning.  He may need to have a test run in radiology tomorrow to make sure everything is ok.  We will update more as we know it.