A Lil' Boy's Journey to Live….


Hooray….we are home!  We got home today around four o’clock.   Riley had his first bolis feed this morning.  He took 70ml/hr.  That was good enough for me.  I did my best to make sure didn’t get upset while he was eating.  If he gets himself crying he start to throw up.  That would have delayed us leaving because they would have looked at it as Riley wasn’t tolerating the feed.  Once he was done I tracked down the Attending and pretty much told him we were ready to go.  He wanted to be sure I felt comfortable before we left, and I told him if I have any problems I’ll slow the feeds or call.  He seemed pretty satisified with that answer and pushed along discharge.
It’s pretty weird having this tube hanging out of Riley’s stomach all the time.  We can go back to see Dr. Nance in three wks and he will put the mic-key button back in.  We have to wait for the track to heal before he will switch this g tube out.  Sooo….we will live with it for a couple wks.  We’re are just glad to be home at this point. 
Thank you to everyone for your support.  Thank you to my parents for taking care of Christian for me.  It makes this whole situation easier knowing Christian is with my parents.  Thank you to Jackie, Dennis, Chris, Danielle, Mary Kay, Dad and Christian for coming to visit.  It saves your sanity a little bit to see your family and friends when we are stuck at CHOP, especially when Riley was on contact most of the time.
Next wk is another sedated echo.  Time to check the pulmonary veins again.  Good willing Riley veins are still stable. 
Until next time….

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