And if not, He is still good

 Many of you know our situation with Ellie Mae. It has taken me quite some time to get ready to share this amazing story, but I assure you, it is just that...amazing. Our girl was diagnosed with Epilepsy when she was 5 months old. With epilepsy comes a lot of unknown. It takes days, months, and years to control seizures and come up with a plan that is completely right for YOU. Since Ellie was 5 months old, we have had hospital stay after hospital stay, numerous EEGs, MRIs, at home EEGs, SPECT tests, PET scans, you name it, she's been through it. 

For lack of a better word, it's sucked. We have continued to try and be positive about it, mainly for her, but there were several days that my husband and I just didn't even talk about her in fear that we would end in tears. We had no control, were helpless, and just had to watch as she suffered. 

Fast forward 3 years down the road. Ellie Mae is, they think, a candidate for surgery. Yes, Brain surgery. I have written about the fear we had in those two little words previously, but it was real and in our future. There was a surgical test they wanted to perform FIRST in order to hopefully find some kind of spot on her brain they could potentially remove. This is called an SEEG. Basically, they would shave the left side of her head, drill 16 holes and blindly put in electrodes in her brain to search for the abnormality. 

We traveled to Cleveland, Ohio and went through a series of pre-surgical screenings such as COVID test, MRSA test, vitals check, and MRI. This MRI was scheduled to solely map her brain because the SEEG is a blind procedure and they wanted to lessen their chance of hitting a blood vessel during surgery. 

That day changed our lives completely. 

Stephen did not have many days to ask off for this trip, so he was working when he could during our stay. I was downstairs with Ellie in the family room of the Ronald McDonald house and I hear running footsteps. My husband turned the corner, teary eyed, and frantic. I immediately thought someone had been hurt in our family. He screamed, "THEY FOUND THE LESION!!"

We just kind of froze. All our prayers. All the tests. All the years. We finally found it. The doctor called him back and confirmed they thought they had found the lesion and we would proceed during the same surgery date and time, but with the removal of the problem area instead of the exploratory procedure. 

We went back to the surgeon the next day to consent to the new surgery. We honestly did not have much time to process, but we knew we had been wanting this and pleading God for this, so we moved forward. Our surgeon showed us her MRI and the spot that had been found behind a hidden fold of her brain. Someone looking at it had a "hunch" and continued to trace and find this spot. It was so small and hidden, there was no wonder why no one else had found it before.

He showed us past MRIs we had done that showed the spot too, but no one could have known because the brain is very lit up while developing and this spot was white as if it was still in development and VERY small. Our surgeon was over the moon. They all celebrated because this eliminated the need to explore her brain. He was very attached to Ellie and honestly, I think he was just good at his job AND being human. We were very excited and nervous about the next day, but ready. 

We decided to celebrate the day before her craniotomy by taking her to a water park. We knew she wouldn't be able to participate in anything like that for a while. In hindsight, this was our worst decision! She had a blast, but that night, the night before her surgery, she developed a cough. 

We woke up very worried. Stephen was a wreck thinking they wouldn't proceed with surgery because of this cough. Me, being the optimist most of the time, assured him it was going to be fine and he needed to chill. In actuality, I was losing it too, but that doesn't help him when I can't keep my cool, so I pretended. 

We arrived for surgery and once we were finally taken back, they hooked her up to oxygen. Her oxygen was staying at about 88-90. The doctor and healthcare professionals put it in our hands to decide whether to proceed. There was a high chance she would have a problem with recovery since her lungs were already working so hard. We sat there crying, staring at them, and thinking for almost an hour. We had basically run out of time. They said we could either come home to Alabama and come back in a few weeks to try procedure or we could stay and chance it. I was numb, honestly and didn't want to make the call. My brain was fuzzy and I wasn't thinking clearly. I am already very emotional due to being pregnant during all of this. 

In an instant, relief fell over me like a waterfall when I heard my husband say, "We are doing it, just go."

Our surgeon jumped at the statement and went into action. They immediately gave her something to make her super sleepy and took her back. We sat there in the empty room for about 5 minutes not really knowing what to do or how to act, just leaning on each other and crying. 

It was like an unsaid thing to leave that room. We both just walked out and went to eat. Trying to do anything to get our minds off of what was happening to our girl. We had a pager that would go off whenever they had an update for us. We waited, anxiously,  for a beep, an update, just a message saying "she's okay".

I know some people might think this is bizarre, but I sat there waiting, thinking about the decision we just made for them to take her while oxygen being low. I told Stephen, I truly believed that was God's way of showing us to trust Him with all this one last time. I felt he gave us this option to choose seeing if we would be able to trust He would bring her through. 

An hour later, we got our first "beep". Surgery had started. We just tried to stay as busy as possible in that waiting room. We really didn't talk to any people, but each other and Stephen called his cousin Noah who was the reason we were able to be there in the first place. We were a nervous wreck and anticipating a problem when she woke, considering all they said about her cough and breathing beforehand. 

About 4 hours after surgery started, we got a call over the intercom to come to the phone. Surgery was over. I ran and Stephen grabbed our stuff to catch up. I picked up the phone and those amazing words "She did amazing and we got it all" was really the only thing I heard. They cut her from ear to the middle of her forehead, took off a piece of her skull, and saw the spot behind the hidden fold. He said that when he saw it, he knew they had made the right decision. The spot was grey in color and a different consistency than the rest of her perfect brain. They took out the whole area (which was very tiny) and then removed a larger piece surrounding it. They tested both pieces to see if the abnormality had spread at all. After years of medication not working, he thought there should be some kind of issue with it spreading, but God saw fit to not allow that to happen. 

The small piece fired off constantly. The surrounding area piece had no abnormality.

The minute we got to the room, she was hooked up to more than you could imagine. She had a tube coming out of her head to drain the incision. She was hooked up to oxygen and was just so tried. She woke up a few times and asked for things like Elf and cereal. I had irrational fears that she would wake up and not speak or be so different we had to re-learn who she was. 

That was not the case at all. Within 24 hours, she was taken off the oxygen. It never dipped below 95 again. She was sitting up, watching moves, eating, playing, and laughing. Within 48 hours, we were discharged and headed home. Our 3 year old had brain surgery and in two days was on her way back home. 

Since we have been home, she has just shown us how much this small spot affected her. Her balance has improved ten fold, she is coping with emotions we never knew she felt before, and she is able to feel things bigger and more whole than ever before. She was keeping so much in before and we just never knew it. 

She is a completely different child, but the same. She has been cleared from surgeon to play, swim, jump, and do anything she wants. We start dance in a few weeks! We go back in 6 months for another EEG to see the progress, but it will outpatient. Hopefully then, we can start weaning her off medications.

They seem to have very optimistic attitudes about her future. Her surgeon told us that the worst was removed and she shouldn't have any more issues, so we pray it stays that way. He says she will be able to swim, drive (which was one thing we really wanted for her one day), get married, and have children of her own someday. 

Cleveland was a Godsend for us. Miracles happened for us in that hospital and we are forever thankful and so so blessed to see our girl thriving, loving life, and kicking Epilepsy's booty! God is so good!