Last Thursday afternoon (Feb. 20) the valve of Meara's shunt slid to the front of her forehead. It's not supposed to do that. The following day Megan took her to Children's for a scheduled wound check and they performed an x-ray. It confirmed that the catheter running from the valve to the empty cavity inside her brain had been pulled out. Meaning the shunt was no longer performing like it should and draining the CSF. So, they sent her home and said to wait and see what happens.
Then, on the way home from the hospital Meara had a seizure in her car seat. The first one (that we know of) since November 25. Megan witnessed it and Meara confirmed it when Megan asked her if she had one.
To say that we were crushed is an understatement. It felt like being punched in the stomach. Sunday was really difficult. The lowest that Megan and I have felt in a really long time. We were tired and drowning in exhaustion. I think if you were to ask me on Sunday I'd say that time is a cruel cruel thing. It can be a best friend or a horrible seething monster that is relentless in inflicting pain and glorified retribution. All the worrying, all the strained minutes of trying to figure things out.
It's like an arpeggiated melody that just won't come to a resolution. It's beautiful at times, but overall you just want it to finally end. Finally come to a place of rest so a new idea can be born. We are ready for Meara to be healthy again. We are ready to have some closure so she can start being a kid again. So we can focus on doing things and living life with the average complications.
So Friday afternoon at 1:30 Meara will be wheeled back into the OR to have the valve reinforced and the catheter reinserted into her brain. This will mark her eleventh hospital stay. The week has slowly progressed to a better place. Monday we started to catch our breath again and we started to pull up our "big boy pants" to get Meara through this next leg of the journey.
So, if you ask me (or Megan) how it's going we'd probably reply "Let's revisit that question in a couple months, or a couple years". For now, it's day to day and minute to minute…just one big dynamic roller coaster of hope that serenity is somewhere on the horizon.
Peace, love, and unbridled determination,
Aaron & Megan