A Lil' Boy's Journey to Live….


Wow…what a roller coaster we have been on since yesterday!  Last night…all was well…Riley seemed to be sleeping so I decided to go to bed.  No more then 5 min. pass and his IV pump starts beeping.  I paged the nurse to come in, and as I was waiting turned the lights on and realized that Riley was COVERED in blood.  It looked like someone had painted his face red.  Well…he had pulled his IV out of his hand, and blood was everywhere.  Ok….it wasn’t that horrible that he pulled the IV out of his hand because he still has one on his foot, but it looked really bad when all you see is blood everywhere. 
Then this morning I wake up to the doc telling me that he heard that Riley pulled his NG tube out last night.  I was like no it was his IV.  Well we went back and forth until he said…Carol Im looking at his face and there is no tube.  Sooo….apperently at some point during the night Riley also pulled out the NG.  I don’t know how I missed that, but the doc said that maybe he pulled it out and went back to sleep without there being a big fuss.  Again…this was ok, though, because he was still draining out of his G tube.
Then…as everything is going good they decide to slowly start feeds through the G tube.  Great….right?  We are laying on the coach, and again his machine starts beeping.  I think of last night and that something is blocked.  I lift his gown, and would you believe that his G tube is laying on his belly!?  It is out!  the tube they just surgically put in his belly yesterday is out!  Come to find out that the balloon that inflates in the belly to keep the tube in place was defective.  Again…would you believe Riley’s luck??  There was alot of drama involved with this.  I cryed alot because they wanted to place the tube back at the bed side, and he was not happy.  I just couldn’t imagine his pain!  He just had major surgery, and now they want to PUSH this button back through a whole that was pretty much closed.  Anyway…after much discussion between the doctors they decided not to put the button back now, and to place this other tube that now HANGS out of his stomach.  The one that Dr. Nance said before we were so lucky not to have….we now have! 
Thats leads us to now.  Riley is just not a happy camper.  He is on contact so he is stuck in the room…he has a tube hanging out of his stomach…..he has an IV in his foot…..leads all over his chest…..his lips are soooo chapped the skin is literally hanging….he hasn’t eaten…..oh….and lets not forget he had surgery yesterday.  
Riley’s cardiologist thinks our luck is just horrible.  Speaking of…..Riley will have a sedated echo on the 21st.  Im sure that will lead us back to the cath lab……cutting balloons….etc.
All I know is our luck needs to turn around.  Its a new year…can Riley get a break??    

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