I am happy to report that after our required quarantine for Malachi he tested negative for Covid. His seizures continued to be aggressive throughout the week and he shifted his bedtime to 4am but we are slowly lowering the number for both of those things.
When Malachi and I had to make a late night run to the Emergency Room on Thanksgiving Day I packed my hospital bag so I would be prepared to stay for a few days if needed. After our one night stay I hadn’t made much of a dent in it and decided to set it in the corner in case it was needed again. Every time I walked past the bag I felt a mix of emotions; there is a sense of security knowing it has all the things I need in case of an emergency but also serves as a reminder that I have to live in a state of ”what if”.
It has been over two weeks but each time I head to unpack it my spirit has felt so unsettled about doing so. Jake is off for Christmas break and I decided that this was the week I would unpack the bag. Living with the lingering fear of the unknown is not a healthy place to settle in.
Saturday afternoon rolled around and Levi woke up abruptly from a nap. He looked up into the air and aimlessly tracked something we were unable to see in an odd trance like state. His arms reached out to the side as if he was reaching for unseen things in a very unnatural way. My stomach dropped as I watched his weird movements and then watched his legs give out from underneath him. I dialed 911 but before I hit the call button I decided to try to get him to snap out of the trance and after one minute he started to respond to us.
For the next several hours he complained about how tired he was and couldn’t seem to keep his eyes open. We went to a public place with mild noise and he started crying saying ”Too loud momma, me go home.” When we got home he threw up his bolus feed right after we sent it in but then started to perk up a bit. Jake and I recounted the event that we witnessed and decided maybe he was sleepwalking and that we would watch him closely, but as much as I wanted to believe that was what we were dealing with my gut told me something else was happening.
Later that evening Jake put Levi to bed and thirty minutes later Levi sat up and started the same strange movements and trance-like state. He also started smacking his lips and doing a few other motions that are very common with seizure activity. I took a video to share with doctors and grabbed that backpack to head toward the ER. This second event also lasted longer than a minute and he immediately fell asleep after.
Full transparency here…I did not handle this well. Having two medically complex children is so so challenging. But knowing that they both are dealing with seizures, especially when they sleep, hit me like a punch to the gut.
The nurses and doctors at the Emergency Room who witnessed the video felt sure that Levi was having seizure activity. Their typical plan for treatment in the Emergency Room for seizures is to do a sedated MRI and an EEG and hope it can catch another seizure while he is there. The entire night was a nightmare as we dealt with Levi’s medical PTSD in full force from just being in the ER. They put us in a shared room and the nurses and doctors continues to stream in and out of our room to see the other patient, each time setting Levi into a panic scream thinking they were coming in for him.
It was nearing 6am on Sunday morning and we still were sitting in the ER with no progress toward a solution. They suggested we wait until the morning shift could come and get the tests rolling but we opted to leave and follow up with Levi’s neurologist on Monday. I did ask them to draw some labs to rule out any blood sugar issues or any imbalance that may have caused it but all labs came back clear.
In an odd connection, Levi also started stuttering the same day of the seizures. I am not sure if this is related at all, but I can’t help but think there is a connection.
I think one of the hardest parts for me in emergencies is the drive to the hospital. When I am in the hospital or at home dealing with an emergency I am distracted from my emotions or from dwelling on the situation. But in the car I can’t help but process, and that is always when the emotions come.
I flashed back to that same drive, in the back of an ambulance pregnant with Malachi and feeling every bump in the road and praying that the baby inside of me would live. I flashed back to the hundreds of time we have driven that exact same path to the hospital for surgeries, appointments, emergencies…and I let the emotions pour out of me.
When we got home Levi and I crashed but I still couldn’t fully rest, worried that he would have another episode. The boys were in the church play early Sunday morning and as much anticipation we have had towards that I knew we needed to get up and create some normalcy. Jake and I agreed to shut off the emotions from the night before and try to have a normal morning.
The boys did so great up on stage, Levi as Joesph and Malachi as a sheep. I will post pictures with next week’s blog for you to see!
Prior to our chaos over the weekend we had a pretty decent week. Malachi’s sweet teacher brought some presets over to the boys, and the gesture more than the gifts themselves made their day.
Levi had picture day for his basketball team and the results were absolutely perfect.
We did lots of fun things this week and had lots of fun Christmas parties with friends, but my brain isn’t able to focus enough right now to share them with you. I will have to save those for next week’s post.
I don’t have much energy right now for a typical full fledged devotional thought, but I do want to share something with you.
In the middle of the week God very directly placed a verse on my heart as I read through Jeremiah. At the time I smiled reading it, not realizing my soul would soon be parched and require its words for sustenance.
”But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”
The heat continues to come for our family, and my prayer is that our leaves can remain green…not by any of our own ability but simply by allowing the Lord to sustain us and continue growth for His kingdom through our obedience.
Even in years, seasons, hours of drought we can bear fruit.
Even in our darkest moments God can cause unbelievable fruit to grow.
Please pray for our family, and especially for Levi. I will be following up this week with neurology and trying to find some solutions so prayers for wisdom is so necessary right now. And pray that we can detach this event from Christmas, with no more seizures. Holidays are already so, so hard for us. We need some respite this go around.
Much love, and sorry for the late post. My heart and mind tried to write one last night but continued to fall short from being able to focus.