I'm sorry did you just say my kid needs brain surgery?

Some of you may already know that my little Tink (Emma) has a brain malformation. To explain this in the most simplest of terms, she has a size 10 brain in a size 8 skull. We found out accidently when Emma was 2. She had an MRI for something else and found that her tiny little skull was squishing  her brain. So ever since, Emma's too big brain has been scanned yearly at Children's to monitor how much pressure is being put on the tonsils of her cerebellum and her spinal cord. Last years scan showed that she had some issues with the cerebral spinal fluid and its ability to move throughout her spinal cord but nothing major, she was asymptomatic. But this year, this year was very different.

Wait For It.........Wait For It.

We showed up at Children's for what became the longest day of my life at 9:00 AM. We waited an hour and a half for anesthesia to come put her under, then waited an hour for her to get done with her scan, then waited another hour so she could wake up. We had a 1:00 PM appointment with her neurosurgeon, that however, we did not have to wait for. They called us back right away and within a minute the doctor walked in followed by his entourage. One was a nice clean looking doctor completing his fellowship, another was a very tired looking medical student, and some nice woman who did nothing but write, and laugh at me. When he came in he noticed immediately that Emma no longer had hair down to her butt, which was nice, he remembered her. The fact that he remembered her counteracted that he couldn't pronounce her name, that's my fault for spelling it weird. Anyway, he came in and asked how Emma was doing? I said "Good..." "Has she been complaining of headaches" to which I down played "Eh, not really, she really just complains about her legs". The neurosurgeon went on to ask me about her leg pain he wanted to know how often and how bad it was. So, I explained how sometimes Emma wakes up crying because her legs hurt. She will sit at the bottom of the stairs and not want to walk up. Sometimes she just lays on the couch. He asked me what I thought caused this leg pain? To which I responded, very matter of factually, "Well she is taller then all of the kids in her class and still growing. So the only thing, I can think of, is growing pains. Or maybe a potassium deficiency? To which I added that I give her a lot of banana's. The nice fellow doctor laughed, at what I could only assume, was the fact that I had no idea I was answering a loaded question. The doctor turned to his computer and started looking at Emma's MRI from earlier and mumbled that I was not going to be able to fix this with banana's.

Holy Spine?

Emma's Brain

Normal Child's Brain

The doctor pulled up skeleton pictures of my kid, its weird to see your kids skeleton on a screen. He cracked a few jokes for Emma and printed her off funny pictures of her face with her eyeballs popping out for her to scare her sisters with. Then he looks at me and points to the screen and says "your daughter has holes in her spinal cord". "I'm sorry, what? Holes? How the HELL did she get HOLES in her SPINAL CORD!?!?!" was all that I could respond with. "Well", he explains, " if you look at the bottom of Emma's brain you can see that the tonsils of the cerebellum are smashed up against the spinal cord and brain stem, in comparison to a normal child's brain where there is space and room for fluid to roam freely" then he continued down her spine showing me where there are pockets of spinal fluid forming in her spinal cord more now then last year. It is trapped and building up causing "holes". I, at this point, could do nothing except stare at my kid who was sitting across from me in her wheel chair with her legs pulled up to her chest. She was still a bit groggy from the anesthesia. So I asked him while still watching her "Well, what do we need to do? Does she need to have it drained? Go on a diuretic?" "Nope" he replied, almost as if I had gotten his Starbucks order wrong, "She needs surgery". I took a deep breath mainly because it was getting hard to breathe."What type of surgery?" I'm still staring at Emma reminding myself to breathe and not act scared or I would scare her.The doctor looked at me and said "well, I need to open her skull remove a piece of it and cut into the outer layer of her brain to install a patch". "So.... you need to open up and operate on my 5 year old's brain?" "Yes, better now then later, when there may be damage we can't fix". The doctor hands me his card and says to call with any questions then leaves and sends in a woman to give me the run down of what was going to happen next. She handed me a stack of prescriptions for before the surgery. Some sort of soap I have to wash Emma in for the 3 days before and something to stick up her nose. She was talking about my insurance, and our percentage, and what we need to bring to the appointment. We would  need to stay there for at least a week. Only I can stay with her in the ICU but if and when she gets moved to a normal room in the hospital two people can stay the  night so I can have a break. She told us Emma had to have blood work that day and then come back in a few weeks for a pre-op meeting with the "team". I listened to them on the phone making a reservation for a room in ICU for after the surgery like it was a hotel. My head was still spinning, I am sure this doctor has done a million of these, but never on my kid. Brain surgery? My sweet, sometimes sassy, teammate needs her skull cut open? What have I done so wrong to have this happen to my kid?

Never Google

Emma's Spine

Of course, unlike any normal parent, I Googled this surgical procedure to see exactly what they were going to do to my girl. I read up on it. Quickly learned how lucky I am that Emma has stage I and not stage II or III both of those are debilitating she would be wheel chair bound and also that we caught it early enough to avoid what could be some horrible issues. I found the government page that gives simply facts, but that didn't help either. So I watched YouTube videos of other kids and their journey most of which made me cry; which was a terrible idea as I was sitting in the waiting room (again waiting) for the lab to call us back. I kept having to look away to stop from crying. Then I found a video of the actual surgery if there is one thing I would recommend to anyone in this type of situation not to do, its Google. 

I am a tough person, I have been through and seen more then most people and I think you can fix pretty much anything by rubbing a little dirt in it. I have a strong stomach, I can handle stressful situations like its a walk in the park. But there is nothing that prepares a parent to hear that their child has to have surgery on the most intricate part of their body. Its one thing to have your child's tonsils removed, but to hear they have to cut out pieces of their skull, open up the dura-matter, expose the cerebellum and brain stem, then sew in a patch is something I cannot grasp. For once in my life I am at a loss. I don't know what to tell her. She knows she is having surgery on her head, she heard the surgeon, but she doesn't know what that even means. I have read and read and the one thing that is said by everyone, is that the pain is horrific. That they will not be able give her the amount of pain medication she would need to be out of pain because its too much, she would get sick. So it will be a balancing act to keep her feeling well enough to eat and controlling the pain. I am a mama bear, I don't like when my kids are hurt, this not only going to be a test of her strength but mine and my ability to not kill someone. Then add to it all that I have 3 other kids and 1 of them isn't even 2 yet. He won't understand why mommy is gone. I will just not be here. So I have to hurt him in order to help her. I will have one in pain and one a hot emotional mess from not having his mom. Who's going to manage the house? Feed the kids? Make sure they take their meds? Snuggle G? Make sure homework gets done? I haven't even begun to think about the fact this surgery is scheduled right after Emma's birthday and right before Christmas and G's birthday. I have no idea how I'm going to pull all that off, I can't even express what this will all cost. I'm hoping that I have enough good Karma that the universe will step in. Its going to have to in order to keep me sane. So for those of you who take the time to read this all I ask is that you pray...pray for Emma to get through this and for me to be able to get her through this.