What a week last week was. This week isn't starting off any better. I've been in a mind fog from lack of sleep, stress, pain, heart break and pure exhaustion. Just when I think I'm coming out of it, WHAM! It hits me again.
We took our daughter to a new doctor to be evaluated and LOVE him. He listened, he acted, he reassured. Immediately upon hearing our tale, he ordered a round of tests which we promptly started a few days later.
Last Monday I took her to the hospital to have her hooked up for a 24hr EEG test and brought her home, and returned with her Tuesday morning to have it removed.
Tuesday afternoon we received a phone call from the doctor telling us our daughter was having multiple seizures and he wanted to admit her to the hospital first thing Wednesday Morning.
Imagine the bottom of your world falling out. Imagine a Nuclear bomb going off. That was what those words were to me. I wasn't sure i heard them right. I asked them to repeat it. But the information was going so fast. Bring her here, do this, don't do this, plan for this. All I heard was my heart stop beating.
The doctor had me meet him in the morning at his office (he canceled a big meeting to see me) so he could explain what they found. He then instructed us to go straight to the hospital for a 3-4 day admit for further seizure testing. And she couldn't be left alone, ever. Because of the type of testing, i had to stay with her 24/7.
And just to throw a wrench into the mix, let me tell you the rest of the story. Wednesday morning my DH and son got on a plane and flew to the east coast to visit my MIL who is ill. So I was left alone with Emily and the hospital. I immediately got on the phone Tuesday night and called my support system of family and friends to step in and help. Whether it was to be there physically, mentally, emotionally or a shoulder, I knew I needed help.
DH and I talked forever in what to do. Should he still go, should he stay. The decision was made for them to go and I would stay with help from my family. It was so tough for him to go. His heart was wanting to be here, but his head told him he needed to go. And my heart wanted him here but my head knew he needed to go. And thank goodness for text and cell phones.
It was an excruciating 4 days. She continued to have multiple and major seizures in her little brain. We still do not know why she is having them. They did an MRI and Spinal Tap on her, and numerous blood tests. Now we wait for the results. In the meantime, she is on lots of new meds to stop the seizures and calm her brain down. They seem to be working after having to work through the honeymoon stage of them. The side effects made her stoned. She was loopy and dizzy and said some pretty funny stuff.
She spent 6 days in and out of hospitals last week. I spent countless hours watching her. Endless hours sitting in folding chairs. Few hours sleeping on a cot. Hardly ate, watched no TV or heard any music, and only had texting to entertain me. I had family show up to relieve me so I could shower and change, friends show up to make me laugh, long distance friends reach out to me through text that kept me sane and grounded.
I still don't know where this journey is going to take us. But it is one I am sure she will come out shining like the star she is. She is my hero. Not once a complaint. Not once a whimper. She took it all. The wires, the cameras, the computers, the machines, the needles, the noises, the food, the medicines, she took it all.
And when it was time to go home, that smile that warms my heart to the very bottom of my soul came on her face and she said "it's time to go home mommy, and don't forget to stop for my McDonald's on the way."
XOXO