My phone rings and it's my daughter. "Mom, he's okay. BUT we are in the ER. I woke up at 4am and he was having a seizure. He is being helicoptered to UC Davis."I was at my mom's in Laguna Woods (7 hours away). Both my mom & I got in the car and headed north for UC Davis. I didn't cry, I just drove. Scared for my Charleston. Scared for Ashley. Scared for Cameron. Scared for me.
My son, BJ, and his wife, Catie headed for UC Davis (90 minutes for them).
Noonish:
BJ calls me and they have arrived at the hospital by ambulance. They wouldn't let Ashley travel in the helicopter, and she wasn't leaving his side. Cameron spoke to them briefly, but then joined them in isolation. At this point, Charleston had experienced 2 seizures - 1 at 4am, the other after the paramedics arrived & that one lasted 2 hours. It took 4 doses of Ativan to stop it. He was unresponsive.
4:15pm: My mom & I arrive at the hospital, met by my wonderful cousin, Ron von Rajcs. We went upstairs but couldn't see them, as they are in isolation because they don't know what is wrong. No germs in, no germs out. They are testing him for everything: spinal tap for meningitis; sepsis; West Nile; Herpes Simplex; and anything else they think it could be. Still unresponsive but sleeping.
6:15pm: Still sleeping, but the spinal tap preliminary results show no meningitis. Thinking it's "only" something called febrile seizures, which is common in kids with fevers. But we don't know WHY he has a fever. White blood cell count is high, showing some kind of infection in his little body.
10pm: MRI
Sunday morning 3am: Charleston wakes up & is responsive!!!!! He is GRUMPY and his back hurts from the spinal tap. Little mama does her best to make him comfortable. He falls asleep again at 6am.
Noon: My mom & I take Ashley & Cameron lunch. Ashley comes out and I get to hug her!!!!! She is SO exhausted, still in her jammies from Friday, hasn't showered. She got to UC Davis without shoes!!!!! Cameron rounded her up some flip flops. She told me Charleston is going to be ok ---- but I'm still scared because we don't have the MRI back yet. I need to hear it's clear. No results have come in yet from outstanding tests. He's sleeping. Another SMA mommy, Kate Mathany, comes to the hospital. Nothing like having someone there that UNDERSTANDS. And thank you, Getty, for giving up your new book for my Charleston.
2pm: He's awake but is super cranky. That's okay with me!!! He's awake!!!!
2:30pm: My Charleston calls me on FaceTime!!!! He is NOT HAPPY, so we talk about how rotten all of this is. Then I get to tell him how much I love him. He gets bored with me and wants to watch a movie!!!! YIPPEEEEEEE!!!!!!!
5:20pm: White blood cells and all labs are back to normal!!!!!!
Sunday morning 11:30am: He's awake, feeling much better. If they can get the remaining tests back today and they are clear, my Charleston can go home!!!!!
4pm: Sepsis test is negative. I told Ashley she is "one amazing mama" and her response? "He makes it easy." That's my daughter.
Sunday 5:08pm: I get a text from Ashley: "Busting out!!!! Everything's negative".
8pm: My Charleston is home, safe, alert, clean, and comfortable. This nana goes to bed!!!!
We still have no definitive answers. Charleston will be wearing a holter monitor to check out his heart to make sure nothing is going on there. We don't think that's it, because he has heart workups every year at Stanford. He will remain on anti-seizure medication until we know for sure what caused the seizures. He will return to UC Davis in about a month for an EEG, which will check for any seizure activity.
This is what the doctors believe happened: about 3 weeks ago, a family friend exposed Charleston to pneumonia. He was immediately put on antibiotics but did test positive for it. He had a couple of days that he didn't feel good, but seemed to recover. Both Ashley and her friend, Cindy, became very sick from the exposure. Saturday night, Charleston got a fever from the pneumonia sitting in his body - that's what caused the seizures. THIS IS WHY IT IS SO IMPORTANT THAT PEOPLE STAY AWAY FROM ANY CHILD WITH SMA WHEN THEY ARE SICK. To a normal person, they recover. To a child with SMA, they can DIE. We almost lost Charleston. Thank GOD we didn't.
We have so many people to thank. First of all, the paramedics that responded so quickly. To the ER staff that stabilized him; the transporters that drove him safely to UC Davis; the staff in the PICU that took such good care of him & understood SMA (that was a new experience); everyone that prayed for my Charleston (there's power in prayer!!!!!); our families for kicking in when we needed support; Ron & Dianne von Rajcs for giving my mom & I such wonderful comfort and a place to rest; Kate Mathany for her support; Getty for giving up her new favorite book; Vinny Gaynor for answering his phone!!!!; Cindy Field for rescuing Charleston's dog and for sanitizing their house; my Mom for taking an unexpected road trip & plane trip: SMA grandmas that texted & messaged me (you girls GET IT); my son BJ and his wife Catie for GETTING THERE; Cameron & Ashley for being the amazing parents they are; and to my Charleston......for getting through this and being the strongest little boy I will ever know. I love you, my precious grandson.
