It’s not a fun topic, whether it’s emotional or physical, our human tendency is to avoid it at all costs.
Over the years I’ve learned how to lean into emotional pain better and better. To not fear and resist it, but let it do its work in me. Usually it brings me closer to God and more changed by knowing Him better. It can be a good kind of hurt.
But physical pain. This one I don’t understand, especially because this specific pain is manifesting itself in my son. It’s not a good kind of hurt in my humble estimation. I’ve been feeling more frustrated than faithful lately.
For months we’ve been trying to identify symptoms and pin down a diagnosis. We’re certainly closer than we were before, but it’s hard when the patient is a non-verbal two-year old. We’ve been through a whole litney of guesses as to the cause. A friend told me the other day, “Kathy, I think you know what it is. It’s what you think it is.”
I’m no doctor but I think it is stemming from Nathan’s genitourinary (GU) and gastrointestinal (GI) systems. They’re a real mess. Catherizing him every three hours has helped quite a bit. I think the relief of the pressures on his kidney helps him feel somewhat better. We saw a remarkable difference in the first couple of weeks. I have also seen a developmental burst since we started cathing. He is trying to vocalize things more and he’s more alert and aware of what’s going on around him. That said, he is still having breakthrough episodes of pain, which are likely GI related. We just don’t have a good handle on his esophageal reflux despite trying numerous medications. I’ve even started trying some weirdo alternative medicine things like apple cider vinegar and activated charcoal with maybe some success. (Yes, my husband rolls his eyes because they are not proven therapies.) We’re not without options yet. We’re making S-L-O-W progress and we have a plan.
On Monday, Nathan is going back in for another upper endoscopy (EGD). We need that little camera to show us the greater picture of what’s happening in his body so we can make some more aggressive decisions. One would be to give him a Nissen, which involves a surgery to wrap the top of his stomach around his esophagus so that the acid can’t come back up. I’ve been resisting this one for quite some time, but the screaming is making me a little bit more open to this option.
In addition to the GU/GI complications, Nathan has exhibited some new symptoms over the last month, which may or may not be related. He’s had four episodes of extreme lethargy. His heart rate skyrockets and his oxygen levels drop and he appears like he’s going to stop breathing and pass out. We suspect he has either some sort of conduction abnormality in his heart. Or, a dysautonomia of his nervous system where the sympathetic and parasympathetic nervous system aren’t communicating correctly with one another. (The GU and GI systems are part of the parasympathetic system.) But I’m not sure what it is this time. Nathan is a mystery. We are the detectives.
He wore a holster heart monitor this week for 24 hours. This data will hopefully help rule out that it’s a cardiac problem, though in the back on my mind I keep wondering what will happen with his enlarged ascending aorta which measures bigger and bigger at every cardiac visit?
The dysautonomia is harder to diagnose and even harder to treat. As long as Nathan is sedated for the scope on Monday, we are also going to re-scan his spine and brain. He hasn’t had an MRI since he was a newborn, and since his Physical Medicine and Rehabilitation doctor noticed the clonus a few weeks ago, I can’t help but wonder if these lethargic episodes are a neurological problem. It’s certainly indicating something isn’t right in his brain or spine. And this spot on his head? I just want to know.
I just want to know because I’m the mom and it’s my nature to want to understand the ins and outs of my child. I want to know because I want Nathan to feel better and not keep having pain or scary heart-racing episodes. I want to know because I think it’s easier than living in the mystery. Living in the mystery does keep me depending on God. The more I depend on Him the more I understand how to make our way through all of these medical decisions.
Call to me and I will answer you and tell you great and unsearchable things you do not know.” – Jeremiah 33:3
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!