Monday, February 6, 2012

Feeding Tube Awareness Week, Day 2

From their website:

 Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Maryam had 4 different feeding tubes ranging from when she was only a few weeks old up until her Mic-Key button was removed when she was 4 years old.  Her first tube is called a NG tube.  The NJ tube or Nasal Gastric tube is a tube that is inserted up the nose, down through the throat and ends in the stomach.  This is placed without any anesthesia and can be done in the home or in the doctor's office.  When Maryam first came home from the NICU she had an NG. 
After one of Maryam's procedures in the NICU she had some trouble with motility, digestion and vomiting so the docs decided to place and NJ tube or Nasal Jejunum tube.  With this tube, the stomach is completely bypassed and the tube ends in the Jejunum.  This is so the body doesn't have to digest the food, its harder to vomit it back up and its easier to pass through the bowels.  Once Maryam was stable again she went back to an NG tube.  
Days before Maryam was discharged from the NICU we had a long talk with her doctors and some nurses about how we weren't ready to have a G-tube placed or have a Nissen/Fundoplication procedure done on her.  So, with that decision came a ton of training.  We had to learn how to place an NG tube in our little baby.  Maryam was nearly five months old, but still only 7 pounds 9 ounces when she was discharged from the NICU.  But I wasn't ready to "give up on her" yet, so we learned how to place the NG. Personally I wasn't ready for her to have a G-tube.  I was still praying that she'd learn to coordinate her suck/swallow/breath, that her lungs would get better and that her GERD would get better.  
When she came home it was a little overwhelming but we were super organized.  We had a binder that we kept track of everything in.  We kept track on spreadsheets of how much food she drank, how much went into the tube and how much she vomited up.  We had  a medicine spreadsheet.  We had a poop and pee spreadsheet.  We had an oxygen tank spreadsheet.  We had a DME ordering spreadsheet.  WE WERE ORGANIZED!  I had to take her, her feeding pump, her oxygen tank and her binder with me to the doctor every week for oxygen tests and weight checks.  She kept failing both.
After 2 months at home and barely a pound of weight gain and no lung improvement, we knew it was time.  The docs ordered another swallow study and upper GI and the decision was made, Maryam was getting a G-tube placed and a fundoplication.  Sigh.  The official reason for the G-tube placement was Failure to Thrive (FTT).  The official reason for the fundo was complications of Bronchopulmonary dysplasi (BPD) due to microaspirations from severe Gastroesophageal reflux disease (GERD). Maryam had surgery July 17, 2007 she was 7 month and 9 days old and weighed about 8.5 pounds.  She stayed in the hospital for 2 weeks and came home with a new feeding pump, feeding pump bags, gauze, tape, rope, syringes and new medications.  
Maryam took her last bottle on August 4, 2007.  Arguably one of the saddest days of my life.  Just typing that sentence made me tear up.  
Two weeks after Maryam's G-tube was placed we took her in to have the tube removed and the button put in.  The button was RAD.  It made it possible for us to put the tube on and off as needed.  When it was time to eat, we attached the tube, when she was finished and vented, we took it off.  It was GREAT.  The Mic-Key button is the brand she had.  As she got bigger, she got a bigger button.  The Mic-Key button and feeding tubes were the only brand we had.  They worked great for her.  I have no complaints. They kept my little punkin alive. 
On September 20, 2010 we took out her button!  Arguably one of the happiest days of my life.  
On March 30, 2011 Maryam's stoma was all closed up!  
Here is a post from the day of the surgery.  I love the before and after shots.  :)

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