First, I have to start by thanking everyone. Of course your thoughts and prayers are so appreciated but really, the little emails and tweets I’ve been getting on my phone from everyone are keeping me sane. Even in the midst of total chaos I could check my phone and it just calmed me a bit. It reminded me that we’re not alone, that we have a huge group of prayer warriors out there praying on behalf of Parker and it settled my heart.
Second, Parker is finally sleeping after 20 hours of crying. She did sleep for a short time last night but other than that it’s been near-constant crying, writhing, screaming, fighting and hallucinating. So this nap of hers was a much needed break for me and Chris. We both got in a nap, I showered and now we’re sitting in her dark room praying she just keeps sleeping.
And while she sleeps I need to write down what happened yesterday, because as terrifying as it was, I don’t want to forget.
She woke up Saturday morning crabby. Both C and I had yelled at her a few times when during yet another melt down I looked at her and knew something was off. She was just TOO crabby. So I took her temp and it was 101.2 under her arm.
We had decided earlier to take all the kids to the zoo in the rain and were So excited about our adventure but when she turned up sick we decided I’d stay home with her and Chris would take Bails and Gray. So he showered and I went for a run, when i got back they left and I took a shower while Parker watched a show cuddled up on the couch. I got dressed, got her some juice and was sitting in the family room working when she started moving like she was getting up.
I think I must have sat there watching her for 30 seconds before I realized what was happening.
Then I jumped up, ran over to her and froze. I had no idea what to do.
I’ve had a seizure before, when I was 5 months pregnant with Bailey and while standing in line at a Subway. I fell straight backwards where a guy sitting at a table caught my head on his foot and another man used his thumbs to pry my jaw apart so I wouldn’t swallow my tongue. I had two circular bruises on my cheeks for a long time. So I knew just to roll her on her side in case she vomited and then basically wait it out. So as I stood there waiting for it to stop I knew I needed help. I lunged for the phone and called Chris, my mom, C’s mom and my friend Angie but no one picked up so i called 911. She was still seizing.
By the time I was talking to 911 she had stopped seizing but was unresponsive to me and I was panicking. Sobbing and telling the 911 operator to HURRY! I’M ALL ALONE! I NEED HELP!
And then, I had no idea what to do. I would have thought my instinct would have been to pick her up but it was the exact opposite. I left her there, not moving, breathing but not waking up and I went and stood at the door waiting for the ambulance.
Strange that I left her at all i think.
The paramedics got there and I was still freaking out. They got her to open her eyes but she was still basically unresponsive so they ran her to the ambulance and sped off. The whole way there she wouldn’t wake up but they reassured me that it was due to her fever, most likely, and she’d wake up soon and be fine. Some kids just do this with high fevers… it was 102 in the ambulance.
So I calmed down. And text my mom (I had finally gotten a hold of both Chris at the zoo and my mom while I waited for the ambulance) which hospital we were going to. I felt ok.
Until we got to the hospital and she started seizing again as we pulled in.
And then it was like a scene out of ER.
They threw her stretched out of the ambulance, they were screaming “she’s seizing! she’s seizing!”, I ran behind them, doctors and nurses flew to her side as they ran by and when we got to the room they kicked me out.
So I stood in the hallway, at the open door as she bucked her little body in the most violent seizure I’ve ever seen.
Admitting came over where I stood just sobbing and asked me all kinds of irrelevant questions, none of which i could remember at the time like when she was born or where we lived. I literally looked at her and had no idea. So I told her “she was born in November and we live in a blue house.” And I’m usually totally calm in stressful situations but not yesterday. I had no brain.
Chris got there with the kids, both totally freaked out and luckily my parents walked in at almost the exact same time so I hugged Bails and sent them to the waiting room. I didn’t want them to see her or me like that.
And the next few hours are a blur. She had a few other seizures but less intense then the second one. The typical seizure reaction to a fever is to have one so the fact that she had so many is a-typical. But what was worrying the doctors was HOW she was seizing… one she screamed through and her motions were “different” than normal. Even the neurologist commented that he hasn’t seen a 3 year old present like this before. I barely left her side except to give updates to the huge group in the waiting room… thanks to Uncle Wayne, Doug, Terri, Bill, Mom, Dad, Jack, Matthew, Clark, Jess, Margaret, Warren, Susan, Angie and Kevin who all came up there for us. Am I missing someone?
They did a CAT scan, a chest x-ray, took blood and a urine sample, did a spinal tap and basically poked and prodded her for hours. She was never lucid or awake. They finally took her from the ER to the PICU around 3pm. I think this all started a little after 10am but I’m not really sure.
Once we got to her room the nightmare just got worse because she was so drugged from the anti-seizure meds she didn’t know which end was up. She cried or screamed from 3pm-11pm non-stop. Of course there were some funny moments like when she yelled at me because, “it’s not Twinkle Twnikle Little STAR Mommy, it’s Twinkle Twinkle Little MOUSE!” If she’d added dumb ass to the end of that statement it would have fit perfectly! But other than a few times it was just awful.
She finally fell asleep around 11pm and slept until 6am which was awesome. Minus the fact that C slept on the hard floor and I sat up in a chair all night. Then she cried again from 6am-1pm today when she finally fell asleep again… and has now been sleeping almost 3 hours.
They still have no idea what’s going on except her fever, which went higher than 105 in the ER is the cause so now they’re trying to figure out the source of the fever. There was a little bacteria in her urine culture initially so while we wait to see if it grows it might be a UTI. One of her ear drums was slightly red also and they say an inner ear infection can cause the rapid change in fever. But really they don’t know yet. She’s on antibiotics just in case it’s either one of those and she’s on Tylenol/Motrin round the clock to keep the fever (that likes to spike quickly) under control.
Tomorrow they will do an EEG and MRI and the neurologist we’ve seen is awesome. Although I have no idea what his name is. I’m hoping we can go home tomorrow after the tests.
Chris and I are tired and worried but hanging in there. The prayers, emails, tweets and FB messages are keeping us going. Our families and friends have been awesome in spreading the word, helping with Bailey and Grayson and doing anything else we need. We seriously couldn’t have gotten through yesterday without the help from everyone… it’s an amazing feeling to feel so much love surrounding you… both in person and on the internet! I can’t tell you how many offers I’ve had from people to bring me a Mountain Dew! HA! Seriously, I haven’t had one in two days and I might just make Kim or someone bring me one tonight!
UPDATE:
The nurse JUST came in and said the urine culture grew so it IS a UTI! That is GREAT news! It means they found the source of the fever and are now starting her on a new antibiotic! They’ll still do the MRI and EEG tomorrow but YIPPEE! GREAT NEWS!
Ok, this is quite possibly the longest blog post ever and I should get ready for B and G who are on their way up here. Thanks again for your support! And please keep the prayers coming! A good night’s sleep would be awesome!
But seriously, like my MIL said today, this is a big fat lesson in grace. To allow people to give to you is HARD. I’d rather do for others than have done to me you know? But this time I will not protest and instead just pray my thank you’s are enough for now!
