a lesson in feeding tubes

Tomorrow 'Catie' will be having surgery at 7.30am to close her feeding tube opening.  Surgery is rarely necessary...but she needs it.  Pray for her!


On the occasion of officially being done with the tubes (wahoo!) I thought I would take a moment to educate others on what exactly we dealt with (she dealt with) in the tube department.

Catie was in NICU for the first four months of her life.  I am not certain when exactly the feeding tube was placed, but I believe it was closer to the end of her stay.  Due to her drug addiction she was not feeding well and subsequently classified as failure to thrive. 

When I first met Catie, she had a GJ Tube.  It was a long tube, dangling from her body that had three ports.  One for the balloon (which is blown up inside her stomach to keep the tube in place), one for her G (gastric or stomach) port and one for the J (Jejunum) port.  No one is quite sure why the doctors felt Catie needed the additional J port, rather than just a stomach port, but the assumption is that babies are less likely to deal with reflux from medications when they are sent down the J port.  Catie and her WONDERFUL first foster mom worked hard together to wean from tube feeding to where she was taking in enough calories by mouth. 

What her GJ Tube looked like from the outside

It was surgically inserted into her Stomach and Jejunum

We did pretty well with the JG tube.  We normally dressed her in a onesie so she or our other kids could not pull it.  By the time she entered our care, she was eating exclusively by mouth and no longer receiving any meds.  Our responsibilities included daily care of the tube (flushing it with tap water) and care of her stoma (cleaning her opening as it was quite leaky and irritated).  So, despite the non use of the tube, doctors wanted to keep it in until fears of her weight gain issues had passed.  The JG tube remained in...until the wonderful day when she was not wearing a onesie and I picked her up out of the exersaucer.  Suddenly I was soaked.  I thought she had a messy diaper and I looked down and 'aaaagggghhhhh'.  I had pulled out her tube.  A trip to our local ER and they placed a temporary catheter to hold the stoma open.  A week later and a trip to the children's hospital further away, and Catie was downgraded to MicKey G tube.  If she needed to have the J portion reinserted, it would have had to be done surgically by scope.  Fortunately, the Mic Key tube insertion was a quick process in the doctors office.  I learned how to insert it, in the event it was pulled out. 

The Mic Key tube was SO much nicer.  So, as before, responsibilities were flushing the tube, cleaning the stoma. checking the balloon fluid level and on occasion, removing the tube to check for leaks or replacing it. 

Catie had the Mic Key tube up until December, when I begged her doctor to get rid of it altogether.  There is no way in haities I was going to mess up her progress and put food in that thing.  No set backs here buddy!  Her weight gain was still slow, but consistent with her growth, so he agreed.  Removal was simple.  I got home that night and took it out.  I put a gauze on top and put her to bed.  Instructions were if it had not closed in 48 hours I may have to come back and get a stitch. 

Well...something got lost in doctor lingo.  After three days I discovered a small leak.  For the last several weeks I have lovingly referred to her site as her blow hole.  I have had to keep it covered and tomorrow it will finally be surgically closed.  Not quite 'just a stitch' but a simple procedure supposedly.

So...hopefully you have enjoyed your brief lesson on feeding tubes.  As I have never fed through a feeding tube, I can't be of too much help.  We have some fancy equipment in our garage and I have learned words such as bolus, that never really applied to us.  BUT, if you ever encounter a child with a tube, Be Not Afraid!