Monday, March 19, 2012

Surviving Status

It happened again, Simon's third status epilepticus seizure in 18 months. It lasted for three hours, starting with only an increased heart rate and eye deviation, but ending as a full tonic-clonic seizure.

Though, by all accounts it was a major episode, a lot went right this time. That's the benefit of experience, I suppose. Because of the pulse oximeter Simon wears to bed, we had an alert system in place and caught the episode right away. Because we have been through this before, we had a plan in place and thereby avoided the chaos and confusion of ambulances and multiple hospitals by driving ourselves. Because we were able to go directly to our "home" hospital where pretty much all of Simon's doctors and care is centered, they had a record of what medications had worked in the past and were able to follow it carefully, without overloading him with meds and putting him into a coma. Because of this, we avoided the intensive care unit and, just 33 hours later, we are home again.

Simon (who is officially the toughest kid I've ever known) miraculously came through it okay. He's still loopy from the meds and very tired and irritable, but he is talking to us and seems otherwise fine. We have follow up appointments set up, more to discuss with our doctors, and more to worry about (for example, we have no idea why he had this seizure)... but for now, I think, a picture is worth a thousand words and I just want to focus on our miracle. Simon survived, he is my miracle, and for now I can't be anything but grateful.

From beginning to ending, here is how we survived status together, again.

Almost as soon as we got to the hospital, Simon's seizure went from a partial to compex episode and was full on tonic-clonic. The very professional staff at Hopkins delivered lots of meds and oxygen, a little at a time. We stayed by him and were made to feel welcome throughout the entire episode. (The Neurologist wanted to know what area of the medical field we were in. He was a little confused when we said graphic design).
Simon stayed in the intermediate care ward while they decided whether to move us to the PICU or a floor room. We waited anxiously for the medicine to take effect and for the seizures to stop so we could avoid intensive care. Simon snored. Loudly.
As soon as Simon started to come around, he requested his teletubby video. Just like the very first time he woke from status. I wonder sometimes if he dreams about them.. (they are pretty freaky).
No rest for the weary. After sleeping off the medicine all day, Simon was up all night. To distract him from the wires and IV that were upsetting him, I took him on a very posh wagon tour of our ward.
Finally, a few moments of rest just before dawn.
I knew we were on the mend when all Simon wanted to do was go outside and play. 
Playing cymbals in the hall and your room is a great way to convince the nursing staff that you should be allowed to discharge early.
Finally, our discharge papers arrived. We tried not to run and skip on the way out.
We're really leaving!
Thank you to all the doctors, nurses, and staff at Hopkins for taking care of our baby. Thank you to everyone that visited, prayed, sent positive vibes, texted with me in the middle of the night, sent notes of encouragement over facebook, and continue to support us and our Simon with your love. I can't put into words what that means to us. It helps give us the strength we need to keep going.


  1. You guys are amazing!!! I'm so sorry that you had to go through this, but so glad that you are so well prepared!

  2. Whew. So glad Simon is such a strong, resilient child and that he has two medical experts (and graphic designers) as his parents. Thank goodness you are all home.