Heartbreak

Hearts are particularly important around these parts. We have been through the ringer for sure with Riley's heart condition-dilated cardiomyopathy. But after a miracle, or a few, her heart is doing amazingly well. So thankfully it's not her heart, but mine that hurts tonight!

On Sunday Riley was having what I think were focalized seizures. So I finally started her on the anti-seizure meds that her neurologist prescribed a couple of months ago. At the time he wrote the script, I had been unhappy with the side effects of Keppra and wasn't totally on board with trying the Trileptal. So I put it in her medicine cupboard and glanced at it several times a day, constantly changing my mind of when to start it.

I started it Sunday and Riley has been out of sorts yesterday and today. She has been lethargic and has had 2 prolonged episodes of serious crying. In the episodes she sounds like she's in pain. I spoke to her pediatrician today who after her exam to confirm nothing obvious was wrong, said the two possible side effects she is experiencing is extreme headache or extreme abdominal pain.

Thinking your child is in pain is heartbreaking for any parent. But what makes it abundantly worse and is so heartbreaking is that my little girl has no way of telling me what's wrong. She can't tell me what hurts. That is SO difficult! It could be a number of things bothering her, but without knowing any specifics it's very difficult for me to help her. All I want, like any mom, is to be able to fight to fix it and make it better. But I don't even know what I'm fighting against because Riley can't help me identify the enemy. So once again I'm left wishing my baby had her own voice!

For now I've been given instructions that I already know. Give the new medication 2 weeks for her to get used to it. Continue to watch her and try to identify triggers. And if anything worsens then call or bring her in right away. Same old story. More importantly then all of that, I will pray for guidance from Riley and Heavenly Father to always help me "hear" what she needs and how I can help. Hopefully the broken heart will help somehow. Maybe it will help me listen more closely and help my Riley!


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