Wednesday, January 25, 2012

The Sounds of Reflux

I know that sound.  It comes, now, with every breath.  It sounds like congestion, but there's no runny nose.  There's no cough. It's as if something is hanging in the back of Lily's nasal passages, but no matter how much we suction or spray, we get nothing.

I know that sneeze.  It is a wet, sloppy sneeze.  A warning.  It usually comes either while we're feeding Lily or soon after, and it means there probably will be vomiting.  It is the sneeze that, when I hear it at night, I either jump out of bed and run to hers or I hold my breath and wait to see if there's any other sound that might indicate this little girl needs her mommy.

I know that cry.  It is one of pain from the burning of the gastric acids oozing up her esophagus or the trauma from vomiting.  Here lately, there's also been a tinge of frustration added to it, one that says, "Why does this have to happen to me, Mommy?"

And I know that silence.  It comes between breaths when she sleeps, more frequently now that the reflux is back.  It is always followed by three or four strong, fast breaths, those that always want to catch up from the few that were missed.  It is called apnea, and it is aggravated by the reflux.  It can also cause pulmonary hypertension.  Not something to be taken lightly.

I know these sounds, even though I haven't heard them for over a month and a half.  They echo and haunt our house, rather unnecessarily, and they burn through my soul.  All of these sounds could be avoided with medicine.  But our insurance company has created this process that people must go through before they will approve such medicine.  To me, it's an unnecessary process because the generic (that they were willing to pay for) isn't being made anymore.  It just makes sense to me that if the generic isn't being made, an option should be the brand name, especially if the doctor has requested it.  Instead, Lily has been waiting over a week and a half for the brand name to be approved.  And that's why all of these sounds are back.    

***Lily has vomited for the past two days.  This morning, it was out of both of her nostrils and running down her mouth, and she was crying and had this pained look on her face.  It took every ounce of strength that I had not to take a picture of her, but after listening to her cry and watching her jerk back, I told her that if it happens again, I'm taking a picture and posting it everywhere I can think of.  I'm sending it to the newspaper and the insurance company along with whatever type of letter it takes to get someone's attention.  I wanted to call and scream at whoever answered the phone, "Do you hear what your process is doing to my child!?!"  I'm so. very. angry. over this.  To the point where I think I need prayers for peace of mind.  It's just very hard when this happens to your own child.***


  1. Oh, Jill, I am so sorry. This is so wrong, on so many levels. I'm praying for you and sweet Lily. And do take that picture and send it in. They need to see what they're doing. Sending love and hugs, Rebekah

  2. Hi Jill,
    I know exactly the sounds you talk about. Are you able to get the meds as in pay for them first till the insurance clears it? We pay through our nose for Vera's reflux meds but no choice, no insurance in this country!

    Also make sure the sleeping angle is 30 deg. Vera's went down to 15 degs and the reflux totally restarted. Positioning at 30 degs or more is de rigeur for her.

    Hope Lily gets better soon!