To Celebrate or Not?

I took Elise to the ER in Manhattan on November 4th because she was clustering seizures and we could not get them stopped. She was on a heavy regimen of pain killers, muscle relaxers, etc. due to her hip surgery on October 19th. She has gone to the ER several times for seizures and we have almost always been able to get a "loading dose" of medication and then take her home. Unfortunately, that didn't work this time. I thought I would take her home in a couple of hours. Instead, we were finally discharged from Children's Mercy Hospital in Kansas City 34 days later. It has been a long haul with lots of ups and downs and twists and turns. The rational side of me says it is time to celebrate! The realistic side of me knows that there is a lot of work ahead!

But, does the work ahead outweigh the celebration? Only sometimes for me. This hospital stay was more challenging for me because she had such unusual reactions to some "normal" ailments for her. She is challenging to figure out at all times. But, I believe we have our finger on the pulse of what works for her most times. This hospital stay was met with a lot more doctors standing by her bed asking us how we think they should proceed. There was no right answer, but there were lots of options. As parents, don't we usually just want someone to tell us how to make it better and then just go make it happen? Unfortunately it doesn't always work that way.

When we came to the hospital Elise was only a couple of weeks post hip surgery. She was barely starting to move around again. More than a month of laying in a bed has not helped that process along. However, we were able to have in patient physical therapy for her that took place more often than what we were going to get outpatient. That is certainly a positive. I pushed her out of the hospital in better physical condition for her hip than when I brought her in. I am certainly happy for that and for her.

Now the real work begins. We have to work on her body being able to absorb food at a bit faster rate so that meals don't take so long. We still have lots of work to do in understanding why UTI's are such a significant part of her life. And the seizures. Always.........the seizures. Everything revolves around how her brain works. When things aren't working correctly there are always other challenges that exist. We are closer to her "baseline" (we don't say "normal" around our house), but we aren't quite there yet. Hopefully a few days in our own beds and our own surroundings will do us all some good. I know I am looking forward to it! So, I will celebrate that we are home for sure. We will tackle the things we need to work on head on as we do each time. It will be challenging. But, it will be good to be back in our own surroundings. Thank you all for your continued support.