The Good, The Bad, and The Ugly of Tube Feeding: Part 2

The Bad

I am going to be completely honest... I strongly dislike feeding tubes.  I might actually HATE feeding tubes.  I am grateful Jayson has one because it keeps him alive, and I try to keep a positive attitude by focusing on the positives, but truth be told-- they are not fun.

The NG - Feeding Tube down the nose into the stomach (A week in March)

• Jayson had to be held down while screaming, crying, choking and gagging while getting the tube placed.
• The tube had to be taped down, which caused rashes, blisters and skin breakdown.  Jayson has to have special tape ordered for his face so he doesn't blister.
• I had to replace the tube myself any time he pulled it out, which was 2-3 times.
• The NG tube is easily clogged.
• Jayson's reflux pill has to be cut, crushed, and dissolved so that it can be flushed down his tube.

The NJ- Feeding Tube down the nose into the intestines (March-end of October)

• Jayson was refluxing and aspirating with the tube in his stomach so he had to have the tube moved to his intestines.  Jayson had to go through a period of hunger when his body had to adjust to not having food in his stomach.  This lasted for a couple of weeks and was a terrible experience.
• The tube has to be placed by a radiologist any time it comes out.  He has to use an xray machine in continuous mode so he is exposed to radiation.
• Jayson has to be wrapped up in a blanket, towels, and/or an Ace bandage to hold his legs and arms down.  I have to hold his head and body still while the radiologist goes to work threading the tube down his nose, throat, stomach and carefully trying to loop it so it ends up in his jejunum (intestines).
• Jayson is crying, coughing, choking and gagging the entire time the radiologist is trying to place this tube.  This process many times took in between 10-40 minutes.  I was seriously horrific.
• The NJ tube came out dozens of times which required a hospital visit each time and exposure to all of the germs in the ER and a LOT of ER copays.
• With an NJ tube, Jayson has to be on a continuous drip of formula all the time.  He is hooked to a feeding tube 24/7.
• This tube is also taped onto the face which causes rashes, blisters and skin breakdown.  This tube had to be fastened even more securely than the other since it required a hospital visit every time it comes out just 1 cm.  
• The NJ tube starts getting gross and clogged after a couple of weeks.  When it's clogged, Jayson can't eat or get his meds and it requires that it is pulled out and a new one put in.
• If Jayson throws up with this tube, it can dislodge it and cause many problems.
• The NG and NJ both cause oral aversion.  Babies associate things in their mouths and noses with the discomfort of the feeding tube.  Therefore, they tend not to like food, binkies, or anything in their mouths.  They tend to also forget how to use their mouths to eat and swallow.  Jayson has only had some mile oral aversion issues.

The GJ- Surgically placed feeding tube in the stomach and the intestines (October-current)

•  This tube is entered surgically.  No one wants their child to have surgery.  This was supposed to be a simple procedure, but it was not easy for Jayson to recover. I seriously hate the idea of a foreign object surgically placed in his body.
• Jayson's stoma has to be cleaned every day and easily gets infected and irritated.  He also easily collects granulation tissue which bleeds and is painful for him.
• Jayson will permanently have a scar where his tube is in his tummy.
• His tube can pull out of his tummy so we have to constantly be watching Jayson so he doesn't pull it out, and so it doesn't get snagged.  If it ever pulls out of his belly, I have to open his emergency kit and pull out a tube with an end that looks like a cork and stick it into his bleeding stoma. It then has to surgically be replaced in the hospital. Luckily I have never had to do this.
• Jayson's particular GJ tube is more likely to snag and pull out of his intestines.  This happened in November and required a 3 day hospital stay and a miracle to get it back in.
• Every couple of months Jayson has to go under anesthesia to have a procedure to replace the tube.  There are risks associated with anesthesia and they are elevated with Jayson's breathing issues.
• This tube is also required to be running continuously so Jayson is constantly connected to his feeding machine, which is getting to be more difficult now that he wants to roll around, move and play.
• Again, if Jayson throws up it can dislodge the tube and cause lots of problems
• With placing and replacing this GJ tube there is a risk of stomach perforation, which often results in death.
• Babies often forget how to eat by mouth after having these tubes long-term.  Fortunately, Jayson does not seem to be having many oral aversion issues at this time.
• Jayson's belly needs to be vented often to avoid vomiting, gas, pain and discomfort.  This requires me to open his G-port and allow gassy air and some stomach contents to exit his tube.

Tubes in General

• It's difficult to go anywhere.  We have his pump in his feeding backpack, with his emergency kit, with his feeding bag, with his flushing supplies anywhere we go.
• Tubes clog.  When they clog, the machine wants to run but can't.  When it can't run, it spits out the tube which therefore feeds the bed, couch, rug, floor, etc.  Just in case you were wondering, the bed and couch are NEVER hungry.
• Sometimes the port to the tube extension pops open, or the G port used for venting is not sealed completely and Jayson is suddenly soaked in his own bile and stomach contents.  That. Is. Nasty.
• Tubes are messy business.  We have permanent stains on our mattress, Jayson's wedge, Jayson's co-sleeper bassinet, our couch cushions, our pillows, our rug, and many other household items from tube leakage, clogs, and medicines. 
• If only I had a dollar for every time I've gone to work with formula, medicine or stomach contents on my face, clothes or in my hair from a tube complication that resulted in me bathing in nastiness.
• Jayson's tummy is used to not having food.  Therefore, if the machine stops running or I forget to press run, it takes many, many hours for Jayson to realize he's hungry.  By that point, Jayson is typically at needing hospitalization to help with dehydration.
• Sometimes tubes are dislodged, kinked, in the wrong place, etc. and cause lots of pain and discomfort.  Because they are inside of Jayson, I cannot see what is causing his pain and discomfort without an xray.
• People stare.  This is a little better now with the GJ instead of the NJ taped to his face, but people stare at a baby with a feeding tube.
• All feeding tubes require supplies.  They may be different supplies, but we always have to have supplies with us and be sure to order them on time with our home healthcare company so we don't run out.  I always have to make sure the diaper bag is stocked with what we need wherever we go.
• I missed out on many months of breastfeeding and bonding with my baby.
• The feeding machine alarm goes off every couple of hours when it is time for more milk, which is sometimes during inconvenient times... like during a legislative session when we are about to present, or in the middle of my nap. 
• Jayson's formula has to be blended so it doesn't clog the tube.  Not a huge deal, but in the middle of the night the blender can wake up the baby, which is no bueno.

 I feel better after letting myself vent.  The feeding tube sucks.  No getting around it.  I honestly I associate the feeding tube with a lot of pain, anger and resentment.  When I think of the feeding tube, it takes me back to that first day Jayson had his placed.  See my old post My Worst Nightmare.  One minute I was breastfeeding my baby, the next minute the nurses were taking him downstairs for a quick test, and he comes up with a feeding tube.  I had no idea that there was even a small possibility he would need a feeding tube.  It was never brought up.  I had no idea that would be the last time I would breastfeed my baby.  I had no idea that would be the last time he would drink from a bottle.  I had no idea that would be the last time in a very long time I would see his smiling face without a tube taped to it.  I felt like my life changed instantly, and I had no say in it.  My baby was different and would be treated differently.  All in a moment.  I hated that day.  I hated that tube.  I still do.  We have recently had another major event happen involving the feeding tube that just adds to that bad taste in my mouth.  I will be sharing the "Ugly" of the feeding tube in my next post.  Thank you for listening and allowing me to be honest and vent my feelings.