Sunday, March 6, 2016

Sonzee becomes a "Tubie"

Lately I have been throwing out names of feeding tubes as if they are common household appliances.  It is pretty amazing how only a year ago none of these terms were part of my typical every day speech and now they have become part of my "professional jargon".  Sometimes I forget how little I used to know and how different life used to be.  I honestly do not think I ever saw a feeding tube in a person's stomach until Sonzee's birthday party when a friend of ours brought her daughter.  I honestly had not even google imaged what they looked like after Sonzee's initial consultation with the surgeon and I do not even know why.  

There are so many types of feeding tubes and various reasons why families might choose one over another, so for the sake of this post, I will explain the type of tube we are doing for Sonzee and explain our rationale for the choice.  Please know there is no right or wrong choice when it comes to choosing the type of tube a person uses, it is all about what works for the family and the situation.  The most important thing to remember is that any way you can get your child to meet his/her nutritional requirements is the BEST way.

From the start, I was very clear that I did not want something that would potentially interfere with Sonzee's desire to eat.  An NG tube goes up the nose and down the back of the throat and ends up in the stomach.  Many families may choose this route if the feeding tube is assumed temporary, if they just want to give a tube a "trial run" so to speak, or because they do not want their child to undergo a surgery.  I personally was against this option because the tube being placed against the back of Sonzee's throat could be such a nuisance to her that she may decide she would rather not eat by mouth.  The reason we are doing a feeding tube for Sonzee is not that her swallowing muscles are weak, nor is she on any food restrictions as far as thickness of liquids or textures of food.  It is because of these reasons; we immediately ruled out the NG tube and settled on a tube that goes directly into the stomach (gtube).  

Originally, Sonzee was scheduled to have a MIC-KEY button.  After speaking with many families, we settled on the MIC-KEY button due to its ease of use as well as the fact that it was inserted directly into her stomach.  The MIC-KEY button does not have any extensions hanging out of the stomach that can be pulled on, and it is easy to clean and easy to change at home.  The problem in Sonzee's case with the MIC-KEY button is that this procedure requires interior staples that with her high dosage of steroids could potentially have problems healing, and she would have a higher risk of developing a post-operative infection.  While her neurologist felt the steroids were not worth putting off until after we rescheduled her surgery we all agreed an NG tube would be our temporary fix.  I was not ecstatic over this decision, but whatever is best for Sonze.  

After multiple back and forth phone calls between the interventional radiology team and Sonzee's AMAZING pediatrician, we were advised that a PEG tube could be our temporary solution.  The PEG tube is similar to the MIC-KEY button in that it is directly placed into the stomach, but there is an extension that hangs out a couple of inches.  This procedure does not require staples, and will give the insertion site ample time to heal before changing to the MIC-KEY button.  We feel this will be a great solution, and we have been advised by multiple medical doctors that the high dose of steroids she is currently taking should not pose a problem for this surgery.  

Her surgery will be Thursday, March 10 at 8am.  I am a little nervous due to our last experience, but March 10 is an auspicious day as Sonzee's Bubbie celebrates her birthday, so it is already looking to be a positive experience.  Please keep the bear and the rest of us in your prayers this week and especially on Thursday morning.

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