Overtime with the Seizure Monster



I found this lovely gem of encouragement the night before our appointment with Dr. Neurosurgeon. Those of you that know me the best, KNOW this slapped me right in the face. I was so thankful to have read it, and to read it again tonight for reassurance.

 

Tuesday (2/21) we were scheduled to meet with Dr. Neurosurgeon at 12:30. We got there a little early as we usually do since we commute over an hour to get there, and we never really know what the traffic will be like. We checked in and found out the wait was going to be about an hour and a half. Uggghhhh, just what people with major anxiety enjoy doing most...waiting.

We killed the time by feeding C-Monkey some lunch, playing on our cell phones, C-monkey played with his toys, people watching, and me surfing around on my "happy place" ~Pinterest.



LOL! Those of you on Pinterest know this is true!



We FINALLY got back in the room, and waited some MORE!! Why didn't we pack a picnic and sleeping bags? We finally saw Dr. Neurosurgeon at 3:00. We were so anxious to hear what he had to say that we didn't flip out over the wait.

Once he opened his mouth, I knew we weren't leaving there with what I thought we would be...a solid plan. Long story short, they really did not get any concrete evidence on Monday's MRI that swayed their thinking and compelled them to commit to surgery. I scanned in a couple of the images from the MRI, and I see the dysplasia. I don't know if it is just because I know what we are looking for. I'm going to do a little experiment and see if other people that DON'T know what they are looking for notice it. I will post the unmarked pics below, and the marked pics at the very end of the post. Let me know if you were able to see the area or not.



Do you see what I see???



Where's seizure monster??

  

They had already planned on presenting him in conference which was supposed to be tomorrow, but the chief of Pediatric Neurology, who has oodles of experience, is out of the country, and I could sense Dr. Neurosurgeon really did not want to conference without him. Me being the modern smart ass that I am asked, "Well, can't you just skype him in?" Duh?? Not likely that will happen so they will conference next Friday instead, & the 10 Doctors on the team (peds & adults) will really scour ALL of the information that they have. So fingers crossed we will hear something next Friday! Actually Dr. Neurosurgeon guaranteed us we will!

We got some "what if" scenarios from the surgeon so that was eye opening. He personally does not feel like a corpus callosotomy would be the most benefit to C-monkey. He believes our next best step, if the team agrees to move forward, would be to place subdural electrode strips on C-monkey's brain via 4 burr holes in his skull. He said he would be in the hospital connected to those for maybe a week. Our hope would be to get the most precise information on whether or not we are battling the right temporal or right frontal sections. We would then decide what surgical course would be the most appropriate. We were disappointed to say the least that once again, things are not clear cut. I'm just trying to think of it as we are in overtime in our match against the seizure monster.

The one great thing from today's appointment, was that I think Dr. Neurosurgeon really got a glimpse of how urgent it is that we do not drag our heels in this.

We have to make decisions.

We have to make the best decisions for C-monkey.

To pull him out of the grips of the seizure monster...but we have to do it quickly!

So we re-energize and prepare to keep fighting the greatest fight of our lives.

We just want to be in the last seconds of the match with our feet pinning the seizure monster to the ground when the buzzer sounds. It is just going to take a little longer than expected.

"Everything always works out somehow. It just does. Be at peace..."

Did you guess right?

2 days....

Tomorrow is a big day for us. An especially big day for C-Monkey. A day that I didn't need to be dealing with snow & ice, which is what we have outside (school has also been cancelled for tomorrow since I started this post)! I needed warm air & sunny skies. Something to lift my spirits. Anything to help me not think about everything I've been thinking about for the past month.

We got the call about a month ago that February 20th was the earliest that C-Monkey could get in for his next step in the process.... a 3T MRI with  Diffusion Tensor Imaging. Don't worry, I had to look it up too. Sadly, a lot of it was so technical that I still didn't have a FULL grasp of what it was. The gist of what Dr. Neuro had told us was that it is a more in depth MRI with finer slices, so that we could get a better picture of where the Cortical dysplasia is and what was surrounding it.

Well, me being me, that wasn't good enough as I've been mentally preparing for tomorrow. So here is what I was able to piece together. This is what the 3T part stands for:

"Magnetic Field Strength is one of the key dynamics that contributes to production of higher quality images, thinner slice thickness and potentially earlier detection of pathology.

Magnetic field strength is measured in “Tesla” units. A “Tesla” (1T) is equal to 20,000 times the pull of Earth’s magnetic field. Therefore, the 3T MRI scanner is 60,000 times stronger than the pull of Earth’s magnetic field. Relative to diagnostic imaging machines, the 3T MRI scanner has a magnetic field strength ten times more powerful than strength of most Open Architecture MRI scanners in use today, in turn providing much higher quality imaging. {Note to self: leave all of your metal junk at home!}

This is an example of a MRI with DTI. Some of the pics I've looked at today remind me a little bit of a Light Brite toy...lol! 

The DTI stands for Diffusion Tensor Imaging. The easy-ish version of what it is used for is:

"DTI is becoming increasingly important in the preoperative assessment of patients... Relationship of the mass with important white matter tracts can be demonstrated, and thus assist the surgeon in preserving function, while maximising lesion resection." For those of you that want to challenge your brains a little further, you may read up here. 

Up until Thursday we figured we would have this done, & then keep treading in the abyss of the unknown until the team could review it & "discuss". I just think it is so bizarre how this team meets & discusses C-monkey, yet they are missing 2 of the most important team members: J & I. We are the ones that have lived through every single moment of this journey. We are the ones (along with C-monkey) whose life will be forever changed by any decision that is made. We are the ones that have the MOST at stake, and yet we aren't included in the discussion. How does that make sense??

I called Dr. Neuro's office last Monday (2/13) as I was leaving work, & left a voicemail with his RN. I have had countless problems with this person not returning calls, or taking forever to return a call. I should have known better. I stated that I had some questions about the MRI, some concerns about his seizures getting worse (he's having them in his sleep now), and I wanted to go ahead & get Dr. Neuro to get us in with Dr. Neurosurgeon so that we didn't have to wait another month to get in with him. All of those sound reasonable, right?

Monday passed without a call. I was annoyed, but okay with it.

Tuesday came & went...no call. Getting even more annoyed. Actually, pissed is more like it.

Wednesday morning came, and I told J that if I hadn't heard anything by the time I got home that afternoon, I was contacting Dr. Neurosurgeon MYSELF. Of course.....no calls! My anger was at a Code Orange at this point! I proceeded to email him, explained the situation, and pleaded to see him as soon as possible (& I made certain to mention that I had called Dr. Neuro on Monday and still hadn't heard anything). I heard from him at 11:40pm in a very empathetic email stating he could see us Tuesday. I went to bed relieved that my persistence & advocacy for C-monkey had paid off, and that SOMEONE believed my child was as important as I do! He scored major points with me in just a quick email.

I emailed him back the next morning thanking him profusely, and accepting his offer to meet with us on Tuesday. I heard back from his secretary in less than 30 minutes with an appointment time. Another bonus point! Maybe my "signs" are starting to pop up?

Oh for those that are wondering....I heard back from Dr. Neuro's RN on FRIDAY, stating that he wanted to look at the MRI and then refer us to Dr. Neurosurgeon. I had steam coming from my ears! She then fed me a bunch of lies on why it took from Monday to Friday to call me back. My anger surpassed a code RED. I gave her a verbal lashing that left me shaking. I was pleased to tell her the facts on how professionals should respond to their patients, and that we would be meeting with Dr. Neurosurgeon on Tuesday! I bet she really won't ever call me back now.

I normally try not to lash out like that, but with the amount of stress we are under, and just the sheer fact that she obviously could give a rat's butt about my kid...it was just too much. It seems to be a common problem in the medical field.  I don't know if it is because hubby & I are both medical professionals so we "know better", but it seems that almost everywhere we go, there is such a lack of compassion from the professionals we encounter. I would really like to devote a blog post to this later.

So, we have a very stressful & busy 2 days planned. Hopefully by the time we leave from our appointment on Tuesday, we will know which direction we are headed with our notebook of questions answered. We would greatly appreciate prayers, happy thoughts, positive energy, and strength for the road ahead. I also want to thank all of you that have mentioned how much you've been touched by our blog either in the comments, FB messages, or in person. I haven't gotten to respond to all of them yet, but know that I appreciate the encouragement, and I promise I will keep on being real. I feel that I have to for the parents out there that feel like they are alone in their thoughts and fears, and for the people that don't realize what all our life entails, and how much it impacts those of us that live it daily.