As most who follow our journey on Facebook know, the past year has been HELL for us. For Silas. Right before Christmas we found the answer to his extreme irritability. No stomach motility. A paralyzed stomach. Can you imagine not being able to process food? Well this is Silas' reality. We thought we found the answer. And I think we did, for the most part. Until this past week. The irritability has slowly started to rear it's ugly head back into our lives. I thought perhaps it was a fluke thing. Something that would subside. Maybe an ear infection. Nope. Maybe a cold. Nope. Maybe a....well lets face it the guessing game goes on and on and on and on, it's truly "the song that never ends" and my least favorite thing about parenting a non-verbal child. The damn guessing game! Can't they just invent something that reads these kids minds, are we not there yet in this crazy technological advanced world! Ha! Wouldn't that be amazing. Until that life changing invention happens we are stuck in this guessing game. So when his irritability started back up I started my list of possible culprits. it's a trial and error process with Silas, or any non-verbal medically severe child. It's been about five or six days since the irritability started and the irritability has gotten increasingly worse, and today I feel like we entered "the worst" of it. A day full of non-stop screaming, angry kicking, crying, mood swings, biting hands, arching stiff body, swatting at his face, frustration, tears, angst. Survival mode. I think I have PTSD from almost of year of him being like this, and today it hit me hard. I thought for a second, what if this is just him. What if this is our new normal. No. It can't be, right? We played one of my favorite games today. (Enter Sarcasm) The game of doctor phone tag! You know the one where doctors and specialists pass your problems off to each other, and waste your entire day. The game where you feel like you are talking to a robot all day. "You have reached the nursing line for....." Ohhhh...this fun filled game we play. Is it so much to ask to speak to a human! I get it, they need to have a system for when people call in, but can we get some kind of free pass to pass go and get right to the source?! Is that so much to ask. Yes. Yes it is. So as usual I played phone tag all day only to get what I asked for at the very start of the day, to see his PCP to start ruling out our list of "what ifs" and try to find an answer. We were running late to the appointment, and they threatened to not see him. Excuse me. NO. You will see him. We are ten minutes late for our 30minute appointment. Im seeing the damn doctor. Thankfully we walked in and got into our appointment with no issues, because I was ready to unleash the dragon on them! Ha! Well as suspected, ears looked fine, actually they looked "great!" Great. Or is it, can the answer just be a damn ear infection ever, at least there's an easy fix for it! No. Not with Silas. His mouth looked fine. Of course. We decided to check his urine to rule out a UTI, knowing it's probably not that. Let's at least rule it out. And finally came to the decision that we would get an x-ray taken of his abdomen to check and see if his GJ tube was in place still and not dislodged. Well of course it was the end of the business day and they won't even be able to read his X-ray until tomorrow. And when I say tomorrow I mean probably by late afternoon after I talk to all the robots again. Because god forbid they call me first thing to ease my mind. Can you sense that I am a little bit hostile? Yes. you are correct. Because when you are five and a half years into this journey, you, too, would be hostile about how we are treated sometimes. Don't get me wrong, I am so thankful for specialists, and doctors, and hospitals, but the system they have for communicating with patients is completely screwed! So now we wait. We are resting his stomach overnight and just running pedialyte through his tube, and at a very low rate incase he is backed up at all, or not hydrated enough, or, or or. That's our plan for now. but really the whole point of me writing this all out is to tell you, you are not alone. We are not alone. There are thousands of mothers and fathers out there parenting complex kiddos like Silas. And sometimes we just need to know we are not suffering alone. To the Mother on a forum that I visit daily on Facebook, I get it. I know what it's like to have your child scream every single time they get in their carseat. I know what it feels like to fall apart and beg to some higher spirit that this crazy life will get easier. I know what "survival mode" is, and I know what sleepless nights and appointment filled day's are like. I hear you. All of you. You are not alone. Let us suffer together.
-A tired Mom