A Sick Baby With No Answers and Why I Felt Like CryingCasi Densmore-Koon
I am sure you all know that Coldplay song that goes like this:
When you try your best, but you don’t succeed
When you get what you want, but not what you need
When you feel so tired, but you can’t sleep
Stuck in reverse
Grayson isn’t broken, he is perfect in every way to me (obvi!), but he is dealing with some health issues. The last lyric in that song defines how I feel right now. I’ve talked about them here. But today I felt stuck.
My Monday started off pretty amazing. I had a phone interview with Kris Jenner right before her Today’s Show appearance to talk about her new show, The Kris Jenner Show. And well, it all went down hill from there. Grayson all of a sudden spiked a 103 fever. Out of nowhere. Whenever a baby has a high-fever it can be scary, but when he just all of a sudden feels like he is on fire—it’s never a good sign. Especially with his history. Grayson has a team of doctors; his pediatrician, gastro specialist, ENT, pulmonologist and cardiologist. Yes, his “fab five” as I call them. Even though Grayson went home with us, we are seeing how his 5-week-early arrival has caused him some troubles.
I called the doctors office and at that point his fever was steadily climbing to 104. They wouldn’t even see us, which I figured. They told us to head straight to the Emergency Room. They know us by name here unfortunately because in Grayson’s 9 months of life, he has been here 5 times. Same old, same old. Full work-up. Urine, blood work, chest x-ray. Fast forward. Everything came back clear except some fluid in his lungs that wasn’t there during his last x-ray. They said it was a virus and sent us on our way after observing him and making sure he showed some signs of improvement. But he never improved and he seem to just get worse when we got home.
Tonight I wanted to cry. And I did. As I was holding Grayson, I just couldn’t get him to calm down. He was in pain. He was hot. The Tylenol and Motrin combo wasn’t working. He was crying in pain. Asking me for help. Grabbing my face as if he was trying to tell me something. All while his eyes slowly opened and closed. I felt hopeless. He can’t tell me what’s wrong and I can’t just put a heating pad on his tummy when it hurts. Tonight he was struggling. It was so obvious. His acid reflux was acting up and I could hear him refluxing and then he would cry in pain. He was in distress and I still think they missed something. I emailed his gastro specialist at midnight – yes, she’s amazing – to ask why they didn’t check his esophagus to see if it was something gastro related. Why just pawn it off as pneumonia and blame it on the asthma? Of course, I think of all these questions after being discharged from the hospital and hopefully we will have more answers tomorrow. Some blood tests were sent out this week to check his immune system so we will wait for those results. His pulmonologist feels like his ENT put tubes in too early and is concerned with how many infections he has had since birth.
It was just one of the moments in mommywood that I just hate. My husband looked at me like, we’ve had sick kids before—why are you so upset now? But it’s different. Grayson is struggling and we don’t know why. We have no answers for this cough that he has had for five months. It goes from asthma to allergies to reflux. He constantly battles with this chronic congestion and a daily cough. Even though his asthma is under control now it seems like the acid reflux isn’t.
Tonight when I go to sleep, I am praying extra hard for Grayson. For the team of doctors, for his fever to just vanish, for his cough to just fade away, for us to not have a doctors appointment 4 out of 5 days in one week. For me to find strength and keep the brave face that I seem to be losing right now. Tomorrow Grayson was going for a cystic fibrosis screening, which he can’t do now because he is still running a 103 fever. It breaks my heart that he is so sick that we can’t even make the testing he needs to have done.
If it’s not one thing then it’s another, but I guess that’s just how life goes. My heart is heavy for my little boy in hopes that they can give us answers soon and I can spend time cuddling him vs. holding him down for an IV.