Adventures in the ER

Austin’s extra chromosome brings us unimaginable love, joy and happiness. It’s not something we would ever wish to change; it’s part of him. We love every part of him and especially his extra chromosome. However, there are times when we get scared. The extra chromosome doesn’t just mean Austin will have physical characteristics of Down syndrome. It goes so much deeper than that. There can be severe health problems that come along with that precious chromosome. I try not to allow myself to think of the health problems that could arise due to that chromosome. Sometimes it’s impossible to ignore that something is wrong. That’s when my mind starts to wonder…could it be this? Could it be that? Children with Down syndrome are at a much higher risk for almost everything, or so it seems.

Austin got sick while we were on vacation visiting my parents. We took him to a Pediatrician in my hometown. The doctor there referred to Austin as a “Down’s baby.” I can’t even begin to tell you how much this statement irks me. First of all, he’s a baby. He loves his swing. He prefers to swaddled at night. Loud noises startle him. He seems to thoroughly enjoy hearing music from the television show, “Glee.” Oh yeah, and he has Down syndrome. You wouldn’t call a baby with Cerebral Palsy a “Cerebral Palsy baby”, would you? I just find it very unprofessional when doctors (of all people) use this type of slang. On the flip side, we are beyond blessed that we have an amazing pediatrician that does not define our son by his extra chromosome.

Okay, I will now step off my soapbox and continue with our journey of Doctor’s visits and an 8 ½ hour ER visit.

To make along story short, Austin has been screaming. All. Day. Long. That’s not an exaggeration. He’s in immense pain and I’ve never felt more helpless. I had the doctor’s office page Austin’s Pediatrician. She suggested we take him to the Children’s ER. He’s been to the doctor 3 times in the past week. His ear infection seems to be recovering, so I KNEW it was something else. I knew it was his stomach. The ER doctor ordered a brain ultrasound, belly ultrasound and belly x-ray, amongst other things. They found choroid plexus cysts on Austin’s brain. These cysts are generally found on perfectly healthy babies and babies with a genetic abnormality. They almost always “go away” on their own by the third trimester. Why does my son still have these on his brain? What do they mean? I received no answers from the ER doctor. Yes, I asked him. However, he didn’t acknowledge that I even spoke and simply said, “we’ll refer you to neurology.“ I’m feisty when it comes to my baby, but after being in the ER for over 8 hours…I was simply too tired to ask the doctor WHY he wasn’t answering my question. He wasn’t the most personable man, to say the least. If anything, he didn’t seem very concerned about the cysts…so obviously they weren’t a red flag or anything. Austin also has fluid around his kidneys. I believe the word was “dilated.” Both of these conditions would likely not cause excruciating pain. However, when they did the ultrasound on his belly we found the culprit. CONSTIPATION. His stomach is full of poop. This explains a lot. Severe constipation is common in children with Down syndrome.

Austin has an follow up appointment with Dr. C on Wednesday. She thinks it could also be Acid reflux…which also makes PERFECT sense. I think it’s a combination of everything. I’m sure she will be able to better explain the choroid plexus cysts. I’m VERY concerned about those. I could feel myself starting to lose it when they told me about the cysts. I know everything will be okay. I have faith, but the unknown is just so scary. Please keep Austin in your prayers. I just want him to feel better.