Have I mentioned I HATE the feeding tube!

An article by larry 4 Comments

Tuesday December 23, 1:45 AM

Well today will go down in history as a really bad feeding day.  Two complete feedings in 24 hours.  This morning right before Lilees 9:00 meal time she somehow managed to pull out her NG tube.  There it was still attached to her face with the tape still firmly holding it in place - except for the fact both ends were outside the body!  I think she was pretty pleased with herself.  So we quickly got one of our spare NG tubes and hurried to put it in.  Thats when we realized what a crummy tube our extra one was.  There was a 1" not very flexible port at the end so when I tried to get it through the nose it wouldn't bend.  The tube was way more flexible than the tube she had just pulled out so that combined with that 1" port caused the tube to just get bunched up in her nose.  I gave up but lucky us Option Care a company that delivers all our supplies for Lilee was supposed to be delivering a new feeding pump today so we called in advance and were told when the nurse showed up she would put the tube back in for us. 

After missing the 9:00, 12:00, and 3:00 feedings the tube was finally put back in and she ate.  What a relief!  So she got her 120ml allotment at 6:00 and 9:00 but . . . About two hours ago Afton went to begin the Midnight feeding and promptly came back out holding Lilee in one arm and the feeding tube in the other.  Same story as earlier - the tape securely fastened to the face but no tube in the nose.  Not a problem however because we have seen the nurses put the tube in 8 times now and it looked easy plus we had a good tube so we decided I would try. We got everything ready gloves on, tube package opened, end of the tube lubed up, stethoscope on, syringe primed with air.  Measured from the mouth to the ear then from the ear to the xiphoid process which came out to 21cm.  The tube was marked with the endpoint so HERE WE GO!  In the nose push - cry - push - cry - push - cry harder - we finally reached the 21cm.  Still crying, not typically the case in previous NG tube insertions, so I test for proper placement.  I attach the syringe to the tube and put the stethoscope on her stomach and inject a little air.  What you are supposed to hear is a little gurgle in the stomach.  What I heard however was more crying and a really funky heart beat.  So I tested again and heard nothing.  Maybe we missed the stomach and got it in the lungs which can happen.  So I took the syringe and tried to suction to see if we got any stomach juices out - NOTHING. 

We decided we missed the stomach so we pulled the tube out to try again.  Lilee still crying I re-insert the tube and make it to the 21cm mark and do everything I did the first time and all I could hear was her crying and funky heart beat.  It thought I heard the gurgling a couple times but I also think I was trying to convince myself I got it right.  Plus we could not extract any stomach juices.  SERIOUSLY - what the heck is wrong with me.  This looks so easy when someone else is doing it.  Third time is a charm right.  Ummm - no!  Third time was as complete failure as the previous two attempts.  So now that Lilee has cried longer and harder than she ever has before we decided to stop and let her sleep.

Looking back on it I realize there was a major problem I need to figure out how to overcome.  If she is crying that hard and won't swallow how in the world am I supposed to get it in the stomach?  Breathing/Crying keeps the airway open but we need that darned airway closed and the stomach opened.  So later on today after we get some sleep I am going to take Lilee to the hospital and this time ask to be trained on proper placement and technique.  Seriously - what takes a Nurse 5 seconds took me 30 minutes and three attempts and she still doesn't have a tube in.

All we can hope for now is that she will want the bottle in her sleep tonight.  Some nights she does and some she doesn't.  Which one will it be tonight?  There are some things I really don't like and one is inflicting pain on my own children.  Other children - not a problem, but my own. . . Have I mentioned how much I hate this feeding tube?