Running on Empty
What a rough week culminating in a rougher weekend. This cold and flu season has been a rough one. It seems like every other week, Maddie has come down with something. Oh the joys of having a child that puts everything in her mouth.
This week Maddie spiked a fever of 102 Tuesday night. Progressively throughout the week her condition worsened. She wasn’t sleeping, despite the medications she was receiving. Wednesday night, Maddie only slept three hours, despite receiving an emergency dose of Klonopin. Her sleep wasn’t much better Thursday or Friday.
I ended up staying home from work so I could be with Maddie Thursday and Friday. It was so hard seeing my little one feeling rough. Between the rotation of Tylenol and Motrin, plus her Keppra and Klonopin, I felt like we were terribly close to seizure territory. Stressors such as a fever and poor sleep can lower an individual’s seizure threshold.
I was hyper vigilant. The whole week I felt like I was on pins and needles, just waiting for something bad to happen. Maddie stopped taking her bottle on Thursday, I just felt like she was getting worse. I was starting to get scared that Maddie was in decline.
Finally on Saturday we relented, and decided to take Maddie into the emergency department. She had only had one wet diaper in a 20 hour span. We decided to make the trek to the Children’s Hospital which is 45 minutes away. The issue was, that it had been snowing since Thursday. We packed up the car and hopped on the highway.
The highway was a disaster. We were heading south, but immediately after getting on the highway, we saw a pickup truck flipped over on the northbound side. We continued driving at a very slow rate. Within an 8 mile span, we had seen 5 accidents. We decided that our local emergency department would have to do.
After being diagnosed with RSV at emergency room and given fluids, Maddie was deemed healthy enough to be sent home. But this whole week has brought on a flood of doubts. Am I doing the right things for my daughter? Even though we love our adopted hometown on the Michigan lake shore, are we too far away from our children’s hospital?
Some of this is just chalked up to being on edge all week. A combination of a lack of sleep and a heightened state of vigilance, has my emotional tank on empty. I think these past two months have really taken a toll on me. I feel like I’ve been expecting a seizure and it’s that part of the diagnosis that scares me the most. I’ve been basically expecting the worst.
Our community has sprung into action. We received numerous texts, calls, and prayers for our little lady. The Angelman Syndrome Foundation sent our family a care package after hearing about our emergency room visit. One act of kindness that meant the world to me, was a friend that I’ve made here in Muskegon offered to bring a meal for our family.
All of that outpouring has helped me through these past few days. My emotional tank is on empty at the moment. I’m not the father or the husband that I want to be. That’s why I love the community that our family has around us. Even in my worst moments, you are there to pick me up.
This will be the last blog post for 2022. I hope you all have a wonderful holiday season. Thank you for joining us on our journey throughout this year, we love you all.
-Written by Adam Birchmeier
