Wednesday, October 30, 2013

A Trial Of Your Faith

Last December I was sitting in church watching a baby playing.  I was instantly hit like a ton of bricks.....there's another baby waiting for us.  I thought this was crazy.  At that time I had no job; I was a substitute teacher.  I had no insurance, and was 40 pounds overweight.  So I put the thought out of my mind.

I never wanted to have another baby.  I miscarried before Brandon, and after Brandon was born healthy I figured that was it.  My health declined and I spent the next 4 years trying to get control of my seizures.  Babies were nowhere on my radar.  If you're unfamiliar with that story, you can read it here.

Last January I was hired at Excelsior Academy.  We moved to Tooele a month later and I began loosing weight.  Job-check.  Weight loss-beginning.  There was still the hurdle of insurance.  There was a 9 month pre-existing clause in my insurance, which meant I couldn't see a neurologist until October of this year.

Just this September, my brother-in-law felt inspired to tell Nick and I that were we going to experience a trial of our faith.  He is truly an inspired man.  I discovered I was pregnant the end of September.

In early October I was able to finally see a neurologist because the 9 month pre-existing condition clause on my insurance had expired.  He was a nice enough guy, and everything was fine.

A week later, after going almost 6 years without having any seizures, I began having them again, completely out of the blue.  Nervous, I went back to my neurologist, and a few interesting things happened.  First, when he went to check my Vagus Nerve Stimulator, it was giving him an "ERROR" sign.  He wasn't sure if this meant something was wrong with my actual device, or if something was wrong with his hand held device.  What's a Vagus Nerve Stimulator?  Read here for all the details.






He said he would call the local "Rep" and see if they could come and take a look at it.  I asked him what would happen if it was the device that was broken, and he told me I'd have to have surgery to replace it.  I reminded him that I was currently 6 weeks pregnant, so surgery wasn't an option until I was at least 14 weeks along.  We decided that if the device was broken, we'd need to tweak my medication until I was at 14 weeks.  I asked the doctor how long it would take for me to hear back from the "rep", and he said they should know by Tuesday or Wednesday (this conversation occurred on a Thursday).  He told me that there was a case worker now who would be calling him back.  He also wanted to schedule a Sleep-deprived EEG.  I wasn't thrilled about the Sleep-deprived EEG because basically you have to go 24 hours without sleep, and then take this test.  It would stress my body into a seizure, which I DO NOT want to have happen.

After speaking with the neurologist, I wasn't happy.  I needed to know right now what was happening.  Here we waited so long to decide to have another baby.  We chose now because I was healthier than ever before.  Now I was 6 weeks pregnant, suddenly having seizures again, and I'm being told that the device that prevents them may or may not be working anymore.  If it wasn't working I needed to increase my medications NOW to stop the seizures.

Being the proactive person that I am, especially when it comes to my health, I called the company Cyberonics, who manufactures the VNS device.  I wasn't going to wait 5 days to find out what was wrong.  I wanted to talk to this case worker, so I cut out the middle man (my neurologist)!

I was put in touch with the lady who handles all cases in the state of Utah.  The lady I spoke to was INCREDIBLE.  I told her my story, how I had a sleep deprived EEG scheduled, and that I was 6 weeks pregnant.  She agreed that waiting to find out what was wrong was ridiculous.  She was so moved by my story, and my knowledge about my situation, that she gave me her direct phone number.  She also said she would make a call and find out what was going on.

30 minutes later I received a phone call back from her.  The neurologists equipment wasn't messed up. The lead in my VNS device was broken, which meant the device was no longer sending the charge up to my brain to prevent the seizures from occurring.  It was going to take surgery to fix it, at which time the doctor would most likely change out the entire device.

Knowing that the VNS device was broken confirmed to me that this was the reason my seizures had begun again.  In my opinion there was now no reason to have the EEG test done.  First of all, I didn't want to miss work.  Second, I didn't want to be stressed into a seizure, and third; it's an expensive test that there doesn't seem to be a need for anymore.

I called my neurologists office the next day (Friday) and asked for the neurologist to let me know if I still needed the EEG test done.  His office called me back and told me that he still wanted me to have it done.  I asked the lady why he still wanted it done and she said she didn't know.  (Really, do people not ask questions like that?)  I politely asked her to ask the neurologist why he still wanted it done, and to call me back.

Friday evening my phone rang.  It was the sweet lady from Cyberonics who helped me discover the problem with my VNS device the day before.  She told me that I had been on her mind all day, and she needed to talk to me.  In regards to the sleep deprived EEG, she told me that she didn't think it was a good idea because I'm 6 weeks pregnant and it may not be the healthiest thing for the baby to stress me into a seizure.  (She is a nurse)  I hadn't even thought about the baby!  I had other reasons why this test didn't feel right to me, but when she said that, it cemented my belief that the test was wrong.  She suggested that I talk to my OB about the EEG, and see if she thought it was a good idea or not.

This lady is very familiar with the neurologists in Utah that deal with VNS patients, and she sent an email to one, and told me that she would help me find a neurologist with more experience.  Let's face it:  the current neurologist was fine when nothing was wrong with me, but he sucks in my opinion now.  The fact that he knew I was 6 weeks pregnant and wanted to stress my body into a seizure tells me that maybe he's not thinking about my best interests.  If we didn't know why I was having the seizures, then I would've gone along with it a little more willingly, but my VNS device is broken, so that explains the sudden rise in seizures.  She spent over an hour on the phone with me.  I'd never felt so blessed before.  Someone I'd never met was watching out for me, and the baby.

I left a message for my OB to call me back regarding her opinion of the sleep deprived EEG, but I knew I was going to cancel the appointment on Monday.

The next Monday I was contacted by the University of Utah, telling me that they had a doctor that wanted to see me.  She's kind of like the "queen of VNS" devices, in Utah.  I asked her office if I should still have the sleep deprived EEG, and they said NO WAY!

I went to see Dr. Combe 5 days later and spent over an hour with her.  In a word, she's FANTASTIC!  The first thing she's says to me is that there is no reason for an EEG, or MRI, and she was impressed and thrilled that I sought out another doctor.  The first, stupid neurologist wanted to turn off my VNS device BEFORE putting me onto another medication to help stabilize my breakthrough seizures.  She also agreed that was a dumb move.  I was given another medication and told that if it controlled my seizures, the next time I saw her we'd discuss turning off the VNS device.  She also told me that no surgeon would TOUCH me while I was pregnant, because I was such a high risk already.  Surgery to fix the VNS device while I was pregnant would be a last option.

So, with the first "trial of our faith" coming more under control, I was looking forward to life getting back to normal.  Unfortunately, the next trial was literally right around the corner.

The very next Monday at work, I noticed blood when I used the restroom.  I immediately became nervous because I've had a miscarriage before, and blood is never a good sign early in pregnancy.  The rest of day everything looked okay, with only a few drops of blood throughout the remainder of the day, and no cramping.  I woke up during the night to use the restroom and my heart sank.  I was pretty sure that I was watching a miscarriage unfold in front of me.  I cried for the next two hours, and didn't sleep the rest of the night.  I called my OBGYN first thing that morning to make an appointment.  Luckily she was able to see me.

My OBGYN is another fantastic doctor, who tells it like it is.  After taking a look, she truly believed that everything could possibly be okay.  The ultrasound showed the blood, but she wondered if it was possibly late implantation bleeding.  All my organs looked good, and she was very certain that she saw what looked like a baby...and i believe I saw it too.  A blood sample was taken, and I was told to come back in 48 hours for another blood sample.  If my hormone level was dropping, we'd know for sure that I was in fact miscarrying.  I went back on Thursday afternoon for the next blood draw, but wasn't able to hear back from her before the weekend.  I had to wait all weekend to find out the fate of my pregnancy.

Since the early morning bleeding, there had been no more blood.  I left feeling a lot more hopeful.  Over the weekend I even had my first episode of nausea...which I was okay with because it was another sign of pregnancy.

Monday I heard from my OBGYN.  She wanted me to come and have another blood test done because my hormone level hadn't increased between the 1st and 2nd test.  I went in that morning and heard back a few hours later that my levels had increased a little, but not a much as she had hoped they would.  I already had an appointment scheduled with her for Wednesday (which was supposed to be my 1st appointment), so I had another 2 days to wait to find out if I was still pregnant or not.

Wednesday (today) came and I was very scared.  Walking into the room with Nick the nurse showed me the "new mom" bag that was waiting for me on the chair.  I told her not to get too excited, as I didn't know if I would be leaving with it.  At that moment I was wishing the nurse had read my file and hadn't put the bag on the chair.  One quick look and she would've known I was there mainly to discover if I'd had a miscarriage or not.

Within the first 30 seconds of the exam I knew the answer to the question that had now been plaguing me for 10 days straight.  When I didn't hear the doctor say, "There it is!", or something like that, I knew that I had miscarried.  There was no heartbeat, and no growth from my ultrasound the week before until today.  I've had 10 days to think about this.  No matter how you prepare for it, hearing that you've miscarried is devastating.  We waited so long to try this again.  I even doubted I could get pregnant again because let's face it, I'm no spring chicken.  It happened fairly quickly, with the timing being perfect because the baby would've been due in early June, which meant I would've made it through the school year.

I went back to the front desk to get the prescriptions I will have to take this weekend to ensure the miscarriage continues and completes itself (which won't be fun), and the sweet receptionist asked me if I received my "new mom bag".  I had to tell her I'd had a miscarriage.  I didn't expect the receptionist to have the facts of my case, so I just smiled the best I could and got the heck out of there.

What I'm trying to remember is that our time isn't always the Lord's time.  Miscarriages happen for a reason.  Something was wrong with the baby, and I know there's nothing I could've done to stop it.

The one plus to all of this is that now I can get my Vagus Nerve Stimulator fixed, and hopefully during Thanksgiving break so that I miss the least amount of work as possible.  My seizures will be back under control, which takes that enormous stress off of me, and allows me to fully concentrate on all the other important things in my life!  An hour after leaving the OBGYN's office today I was on the phone with Dr. Combe letting her know the situation and how I now wanted to schedule the surgery.  Schedulers will be calling to make my consultation appointment where I can now have x-rays done (since I couldn't have them while I was pregnant) so that everyone can be completely positive about what needs to be done, and we can get this fixed.

I don't know what will happen in the future, but I'll deal with it one day at a time.



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