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.