Thursday, June 17, 2010

The "S" word, and other words I don't like.

When we took The Chubs to have her upper GI X-Ray done about a month ago, we sat in a waiting room that also held children that were about to have surgery. I prayed at that moment we would never have to be back at that same spot for that reason. I watched as tiny babies, inquisitive toddlers, and other small children sat in their PJ's next to a bag of items they would need during their stay and recovery. My heart went out to all these kids and their parents. To see your child have to go through something like that would have to be extremely difficult. I didn't know why each of them were there, but I could tell by the facial expressions of the worried parent accompanying them, that no matter what type of surgery it was, no matter how noninvasive, it was still hard to watch as their precious child was about to go under the knife.

A few days ago The Chubs was eating at her all time worst. I panicked and called the pediatrician. It's obvious she's very bothered by her reflux lately. The coughing, gagging, and occasional vomiting along with extra fussiness, all the tell the tale of a miserable punkin. The added Maalox 4x a day is not doing anything so far. I know that it could take a few weeks to notice a difference there. I have also cut out dairy for 2 1/2 weeks now. Nothing has really changed or improved. My guess is that the extra calories we're adding to her diet by concentrating my milk with formula is hard on her tummy as well.

I received a phone call back from my pediatrician yesterday. I wasn't near my phone so I received a message from him instead. The gist of it was that what she's eating isn't enough to help her grow if she continues eating this poorly, and since the medications aren't helping a lot the next step would possibly be surgery if things do not improve. The "S" word I'm referring to? That's it. Surgery. It's called the Nessen's procedure, where they tighten the sphincter muscle to prevent her from refluxing as much. The good news is it is done laparoscopically and only has a recovery time of a few days. But still, just the thought makes my heart drop in my chest.

Trying to collect myself after finding out this information, I called the recommended surgeon my doctor gave me a number for at Children's Hospital. At this point, he hadn't provided the name of the type of surgery so when I called and they asked, I tried to explain it, but didn't have the right terminology. The lady ended up asking someone else what it might be and she said, it was probably a G Tube. I immediately started freaking out. In case you don't now what that is, it's when they have to make an incision and insert a feeding tube directly into the stomach. You would then feed the baby exclusively through this tube. The lady on the phone said "I'll just note it's for a G-Tube", scheduled my appointment and hung up. Feeling completely overwhelmed, I called my pediatrician again to confirm what the procedure was. That's when he confirmed it was the Nessen's Procedure, NOT a G-Tube. So I called Children's back again and corrected the appointment to say the right thing.

On top of all this drama, my insurance has decided they no longer want to cover prevacid for The Chubs. In a letter sent this past month, they stated that they have found over the counter medication to be "just as effective". What they fail to realize is that prevacid in solutab form is NOT provided over the counter and you can't shove a tablet down an infant's throat. It just doesn't work that way. The nurse at my pediatrician's office (who I love... smoooches!) spent over an hour on hold with my insurance company trying to speak to someone who could resolve this issue. She was disconnected several times, and given an invalid number to call. Needless to say she was a little ticked off, and rightfully so. I was frustrated for her and for us as well. I'm visiting relatives in California next week and HAVE to have this resolved before I leave. I can't go without her prescription, considering that anytime she misses a dose she vomits quite a bit and eats like a bird.

Our final solution is to have a local compounding pharmacy turn some over the counter Prevacid into liquid form so I can administer it to the little muffin for now, until this situation can be resolved. They charge about $55 for this service plus the cost of the over the counter medication, but this is much less than the $300 it costs out of pocket for the solutabs. It's getting ridiculous. It sounds like insurance would rather cover the cost of surgery and any other aftermath that may come if my daughter is not on prevacid. No, they didn't tell me this, but if they won't just buck up and cover the solutabs for my daughter to manage her reflux, there will be many more consequences down the line that THEY will end up having to cover.


  1. You have a lot on your plate. I will be thinking of you in the next coming days that everything will get resolved!

  2. Hey Ellie- I'm going to try to call you tonight. I don't have enough time to type everything one handed that I want to say. Hang in there! And in the meantime, check out and the reflux rebels group on BBC.

  3. First of all, I just wish I could hug you right now. I'm SO sorry for everything you're going through. And I'm so sorry that your precious little Muffin is so uncomfortable. It just breaks my heart for both of you. I am praying that her eating starts to improve and you don't have to move forward with the surgery. That's a terrifying prospect for any parent. I do agree that "at least" it's laparoscopic if it does have to happen but I know that's a very small consolation right now.

    And WOW about your insurance company. That is just downright ridiculous and unfair. There has got to be something you can do about that-- some higher power that can override that or something. It's just insane that they don't want to provide an infant with the medication she needs. That infuriates me. Good for your nurse for calling them. I hope she gets through to someone eventually who can help out.

    You guys will continue to be in my prayers. Love you!

  4. Ahhh- I'm so sorry you guys are having to go through all this!! I hope Little Miss starts feeling better (and eating better)! And I hope she doesn't have to do surgery! Let us know if you guys need ANYTHING!!

  5. My head was in my hands the entire time I read this post. I am so sorry for what you and your family are going through with little chubs. You will be in our thoughts.

  6. Ellie, I can feel the heaviness and heartache in your words about the possibility of surgery your little Chubs. You have so honestly poured yourself out in this post in that it shows the love a mother for her child. Health problems are difficult enough to handle about yourself, I can only get a hint of what it would be like to have to watch your own child struggle by reading your post.

    And the stress of your insurance company on top of all it is maddening. I hate insurance companies. They are supposed to be there to protect you when the big crap happens and when it does, you have to fight with them to do what is right. Keep on fighting the good fight and know that your have a lot of people praying for you and your baby girl.

    (((HUGS)))--which would be so much better if I could do it IRL.

  7. I'm so sorry you are going thru this with the Chubs. I know it can't be easy. Praying for you all. Love ya.