Saturday night, November 6th, Ella went to bed as she normally does...happy and in a good mood at around 8:30pm. Joe and I started shutting down the house and then he went to feed Jonathan and I went to bed (we alternate feedings so I had the overnight shift). As I got in bed a little before 11pm I heard a noise, I totally thought it was a dog far away because it just sounded like a faint sound over and over again (barking dogs at night drive us NUTS). I decided to sit up and see if it was coming from one of the monitors in our room (one for Ella and one for Jonathan...Will we can hear screaming from anywhere in the house). As I got oriented I realized it was coming from Ella's and then suddenly realized that, although it could be her kicking her bed in a rhythm (totally normal), I needed to check it out. I found her seizing in her bed, left the room to say "Joe, seizure" and went back to get her. Ella's seizures are not pretty. They are violent and scary and messy. She had vomited and her body seemed to be convulsing more than normal...and normal is pretty bad. We have our system down so we administered her Diastat (rectal seizure meds) and checked the clock. If the meds take longer than 5 mins to stop the seizure then we call 911...the seizure lasted 10, that we watched. Yes, we sit there and watch her, pray over her, sing her songs and tell her how much we love her, how strong she is, and that it will soon be over...it's a long 5 minutes. We can't hold her or try to make the convulsions stop, we just watch and wait. By the time the paramedics arrived they had slowed down considerably, but she was not "back" yet. I later learned that this period after the seizure is the Postictal state...as they said the word about 50 times that night. So, the paramedics didn't even get vitals at the house, they just loaded her up on a stretcher and we got in the ambulance and headed for Medical City...Joe was following shortly as soon as his mom arrived to take care of the boys.
Let me take a minute here to say a few blessings that have already occured up to this point in the night:
- I had Ella's monitor on and heard her...usually if I go to bed before Joe I turn the monitors off so that I can fall asleep and he turns them on when he comes to bed. All of Ella's seizures (up to this point) have happened early in the morning so I've never considered one to happen while we're still awake.
- Through all of the firemen and paramedics being in the house (probably 6 or 7) neither of the boys woke up or made a sound. God knew that we needed to be able to focus all of our attention on Ella and the boys slept soundly at this time.
- Joe's mom lives 20 mins away and has come to our house for almost every seizure so that we can both be up at the hospital...we work much better as a team and a unit.
So...we head to the hospital. I'm with Ella and feeling pretty..."seizure as usual" until I realize that she's breathing really off and isn't acting her normal "post-seizure" self. Within minutes she's vomiting...has NEVER happened with a seizure before this time. It was so strong and forceful...and then the room erupted. They weren't sure she was protecting her airways so they called in a team of doctors and support personnel to possibly intubate her...I was overwhelmed at the number of people who were on my small child. One guy looking down her throat, people on either arm starting lines, people getting supplies ready, and a chest x-ray machine was wheeled in...and Joe wasn't there yet, I literally thought I was going to pass out or break down crying. They decided not to tube her because they found just enough gag reflex to believe that she wouldn't aspirate. In walks Joe, and boy did I need him. They put oxygen on her, and waited for her breathing to regulate and for all of the labs to come back. We did a urine sample (poor child has been cathed so many times!) and we waited...and waited.
More of God's love for us:
4. A very dear and wonderful friend of ours, Catherine Couch, went to our house to stay with Jonathan. This was so special because he's still at the stage where he needs to each at least once during the night and then again early morning so it was amazing that we had someone take care of that so that my Mother-in-law didn't have to.
We waited and watched as the one o'clock hour came and went...twice (ah, daylight savings). By about 2am (5 hours after the seizure started) we got word that we would be moving to a Pediatric room and by 3am we were settled in and ready for a couple hours of sleep. Sleep. Our room had two beds, which was actually perfect. Joe slept on one bed and I slept with Ella. Ella in a hospital bed is dangerous. She can move around and get around, but has NO concept of falling, getting tangled in cords, or hurting herself...so someone had to be with her at all times, no exceptions. Sleeping in a hospital bed is never comfy, add in a 4-year-old, wires and IV lines, beeping monitors and pumps, and someone coming in every 4 hours to check vitals...I got about 3 hours of sleep that night. Sunday was long. We woke up and realized we didn't know any more than we did a few hours before. I headed home for a couple of hours to hug the boys and check on my mother-in-law. I got a chance to watch our 9:15am service at church with Josh Hamilton as the guest and loved that I got to catch it.
God loves me, Part 3:
5. As I was at home to take care of some things I got online and realized my best friend, Stephanie, who lives in Oxford, England as of 2 months ago, was online. WE GOT TO SKYPE! I got to tell her about Ella's night "in person" and we got to talk. She and her girls prayed with me (and Will) and we got to catch up. I saw today that it was almost 45 minutes long but it seemed to go by so quickly. There were tears shed as we hung up, but God knew I needed her that day and I was so blessed by Him.
So, I went back up to the hospital. Joe left to come home and thankfully Kristie (who used to be here full-time) came over for the whole afternoon and took care of the boys so that Joe could catch a nap and just catch up. I had some wonderful visitors of Caroline Moore and Marian Ashwill...it's nice when people can come up and laugh and pray and love on your child. Caroline even laid in bed with Ella for a while so that I could just get up and stretch...more blessings. My cousin, Katy, came over to our house after Kristie left so that Joe could do bedtime routine and then come up and hang out with Ella and me for a little while. All of this time we are just waiting for her to just be a little more "with it" and start to eat and drink...she didn't drink anything until after 6pm last night...too late to try and get discharged.
Last night Ella and snuggled up again in our hospital bed and caught a few more hours of sleep...like 5 or 6! Today our beloved pediatrician came in and broke us out of jail (we *heart* Dr. Nale). All of our labs came back clear. No UTI, no ear infection...nothing they could find to explain anything.
We're home and recovering. I'm going to bed and getting to sleep the entire night without disruption (thank you sweet Katy for coming back over and taking care of Jonathan tonight) and hopefully our whole family is on the road to recovery.
This was so much harder for so many reasons. I really hate being away from Will and Jonathan for that long. JT is only 3 months old and I know he doesn't understand, but I feel like I'm abandoning him. Will knows I'm gone and misses me and that makes it hard. Ella only wanted me so I needed to take care of my sick baby...and if I'm honest, this was one of her hardest seizures on me. I very rarely let my brain go to the place that says that we could lose her. That all of her medical complications are just scary individually, but combined she is so fragile and it could go from our "normal" to bad very quickly. Joe used to be so afraid that the seizures would cause a heart attack or at least heart damage...I've never felt so afraid as I did during this attack.
I know God is teaching me...I just want to remember to rely totally on Him and trust Him to take care of my child...for we are all HIS children and He loves Ella more than I ever could.