To ablate or not to ablate...

*post visit stop at Barnes & Noble. Books are Ezzie's after-visit lollipop. She got 3. Mom got 1. Dad got none.*

 

The Nelson Squad met with Dr. Horikawa today at Randall's to discuss Ezrah's pain levels and possible treatment options. (For those who don't know, her pain is back with a vengeance, mostly at night.)

He believes Ezrah is presenting as a typcial Osteoid Osteoma patient, however, she does have some weird stuff going on with how the inflammation is presenting in her body and she's a bit of an anomaly. (Which is why this crazy kiddo's leg has presented as an infection and was treated for such. Regardless, that treatment did eradicate the holes/inflammation in her tibia.) He would like to do another contrast MRI (which has Ez completely paralyzed in fear) to get another data point post-op and 6 months from her first MRI. (Y'all, that first MRI was a complete trauma sitch for her and therefore she is completely, understandably scared. The IV tech was NOT kind or good and it. was. stressful. So, another MRI with IV is on the docket because her case is simply NOT straightforward.) Could you pray we get an actual Pediatric IV tech? One who is patient, good with kids, and hits the vein on the first go?

If the pain she's experiencing does not relent, Dr. Horikawa will go in for an ablation (using either heat or ice) and put in a "cement" stabilizer to help her with weight bearing. He will also take a biopsy which would help reach more answers and nullify any of the big, bad, scary things (which we're mostly convinced is off the table. PRAY for Becky's heart. ) This would be an outpatient/day procedure here at Randall's. In the meantime, at home, we are to keep track of her pain levels and OTC meds that bring her relief.

As with EVERY part of this journey...there are risks with doing and not doing this. We don't want to medicate her every night, but we've had to lately so that she can sleep. Ezrah is scared. She's so done and wants this to be over. We couldn't bring Luna today knowing we needed to 100% focus on what Dr. Horikawa was saying. She was in tears and her response is always to shut down. Fear is a paralyzing liar. But, fear is fear. I'm convinced there is nothing harder than a) seeing your kid in pain and b) watching your kid completely overcome by FEAR.

So, clearly our journey is not over. Some days (most days) are like any other day. But, when the pain hits, it hits with a vengeance and we desperately want Ezzie to just be FREE of it all. Absolute FREEDOM from this.

Thank you for supporting and loving on our little family in The Shire. As always, we'll update when we know more.