Frustration. Sadness. Confusion. These are only some of the emotions I am feeling today. It has been a long weekend and an even longer start to the week. Wally has been screaming in pain, super whiny, clingy, and we have no answers to show for it. I spent all day yesterday on the phone with his care team trying to figure out if his behavior was normal teething behavior or if something else was going on. Is it teething? Maybe, he is cutting a tooth. But is it something else? Honestly at this point I do not know if we will ever have the answer to that. Because… another test done and nothing to show for it.
We made an appointment with the GI yesterday, convinced that the results from his Ph study were going to come back that he has severe reflux. If it could be anything we wanted it to be that. We really just wanted answers for why our child doesn’t sleep and has days where all he does is scream and cry. But once again we were left feeling defeated. The study came back that he was not refluxing. The only thing it really showed was that he swallowed air 222 times in a 24 hour period. Ok, what does this mean? To be honest I am not sure. Dr. Khaled can be hard to understand at times, and I do feel like there is a language barrier. When he was explaining it to me I only got bits and pieces. Obviously swallowing that much air can cause discomfort, especially if it goes beyond the stomach and in to the intestines. But it is the question of why is he swallowing that much air that we do not know or understand. Dr. Khaled’s solutions were to start another probiotic and to vent the g-tube more (We’ve tried a million probiotics and we vent the g tube often!) 😢😢. When I asked him why does table food cause him so much discomfort than? His response was to do blood work and determine if he has any food allergies. Another test to put my baby through that will probably come back normal as well.
I cannot even begin to describe the frustration that AJ and I feel. Here I am putting my sweet nine month old through test after test. Tests that my husband does not even want to do. And they all come back normal! We have nothing to show for it. It was all for nothing. I am exhausted. Run down. Drained-emotionally, physically, and mentally. And if one more person says, “He has come such a long way. He will get there”, I may scream. It has been nine months of these GI issues and no sleep and no one can tell us why. I am starting to think maybe I am just crazy. Like, what am I doing? But these doctors and people who like to put their two cents in, do not lose sleep at night. They do not have to sit there watching your baby scream in pain and there is nothing you can do about it. They do not have to sit back and watch their baby suffer and realize there is nothing they can do about it. You see… they, like all of you, get to see the happy, smiley, Wally. No one understands. No one gets it. And it is frustrating and maddening to the point I have cried a lot in the past two days.
Usually I try to think positive. And maintain the “This too shall pass” outlook on life, but you can only take so much before you break. I am close to that breaking point. I am just not sure where we go from here. I’m second guessing every decision I have ever made for Wally. I feel like (excuse my language) a shitty mother. Moving forward, I do not know what is the best thing for him. “Follow your gut” is what people say. Well my gut so far, has led me to the place we are at now, and look where that has gotten us. Nowhere. All I can do is keep praying and hopefully God will hear my prayers.
Wally’s Momma 💕💕