Archive for October, 2010

Monday’s surgery canceled.

I had a surgery scheduled for Monday. It’s no longer scheduled. Period.

For those of you just tuning in, I had surgery on September 13th to receive a Cochlear Implant. As it happens on rare occasions, my implant failed to activate, and after a few tests, I was scheduled again for surgery to fix my implant.

My husband came home from work a few minutes ago with pretty crazy news. My original surgery was funded by a state program, Department of Assistive and Rehabilitative Services (DARS), and my caseworker called my husband and told him that we should not go in on Monday for surgery. Apparently the paperwork bureaucracy is at fault in that DARS hasn’t approved to fund everything that my ENT’s office is doing.

When my husband came in and told me that Monday’s surgery was off, all I could do was break down into tears. My first emotional response is that I just hate it all. I hate that every day they postpone my surgery, I’m missing something in my life that is so precious to me.

Thursday was my son’s very first party at his preschool and I couldn’t hear anything his teacher said or asked. I couldn’t hear the chatter of my little boy with his fellow classmates, or even make small talk with any of the other mothers. I miss so much. Every day.

I don’t know who’s to blame for the postponement. I want to point the finger at my ENT because does it really matter who pays for it right now? I shouldn’t even be in this place, since the surgery should have been done right in the first place. But then I wonder if I can live with my finger pointing like that because really my ENT is just an average guy. There’s just no possible way for a person to perform hundreds of surgeries and not mess up at some point. You point the finger if you’re perfect, because I know I’m not.

It certainly doesn’t mean it hurts any less. I’m so devoid of energy at this point to do anything. I just want this fixed and I want to be able to hear again. Frustration at it’s peak!

Advertisements

Early Monday

I don’t know why I figured that I wouldn’t have to go into the hospital for pre-op bloodwork this time around, but apparently it’s true. And fyi, when they take your blood for the labwork, it only is good for 14 days. Who knew?

On Wednesday when I was at the hospital for the pre-op stuff, me and my mom also had to talk with the billing lady. They like to take your insurance card and driver’s license and make copies, despite the fact that we did this only a little over a month ago and they probably already have a big file on me. But regardless, we sit with her to go through all the paperwork and she asked us what the surgical procedure was. So I guess this stuff really doesn’t happen much since she had to have to figure out what’s going down on Monday.

After talking with the billing lady for a while, we were asked to wait in a different area until the nurse called for me to do the bloodwork. From even across the lobby, my mom and I could smell the coffee that someone had brought into the room as we were pointed to where we needed to wait, and it’s only natural that we drifted a little further down the hall than we had to and found the room with the coffee.

Sitting on a counter in a waiting room was this beautiful shiny little contraption that brews just one cup of coffee at a time. I’ve never actually used one before, and apparently neither had my mom. Next to the coffee maker were these little disposable(and sealed) cups of coffee grounds, and they reminded me of a individual little thing of coffee creamer, only about five times larger. My mom picked up the type of coffee grounds that she wanted and after that I’m not really sure what she did with it. I opened the top of the coffee maker and saw that an old used container of coffee grounds was sitting inside, my mom removed it, and I closed the lid. We were debating if we should open the new container or if it goes in unopened, when my mom punched the button on the coffee maker for 6oz of coffee.

As the coffee maker starts spewing hot water out the bottom, I say, “Do you think we’re supposed to put the coffee grounds in before you push that?”

And once it started, there was no stopping it. My mom quickly placed her foam coffee cup under the maker to catch a majority of the liquid, and we stand there to wait out the process. The maker finishes and we open the lid to put in the actual coffee grounds to start over, and suddenly my name is called. Darn! We turn around to head back down the hallway and I suddenly notice several pairs of eyes quickly diverting from my mom and I. Obviously we were something to watch. But hey, at least we know how to use one of those things now!

My bloodwork went fine, I answered a million and one questions about my medical history, and we quickly exited the hospital, ready to go back to my mom’s and brew coffee the way we know how.

My focus since Wednesday is more geared toward my surgery (not the coffee maker mishap). I’m curious as to what my recovery will be like this time around, since I really have no clue if all my muscles will be affected like the last time, or if it will just be more numbness and pressure from having stitches again. I guess we’ll wait and see!

Until then, I’m cleaning house, stocking groceries, and doing laundry to be prepared to do absolutely nothing for those first few days. I’m counting the days until my alarm rings 4:30am Monday morning to prepare for this next time around.

Fall Festival Fun

I love fall.

There’s just something about the weather getting cooler, the leaves changing, and the approach of Thanksgiving that will lift a weight off one’s shoulders from a too busy schedule, and it reminds us to slow down. It reminds us to remember the moments that pass us, take mental pictures of events that fly by too fast, and to sit back and enjoy this life that we have, despite obstacles it may contain.

My husband and I have never been big Halloween fans. Kinda like the creepy incident the other day, we’ve always made a point to refrain from celebrating such a dark day. We were both raised by Christian parents, but even if we hadn’t, I wonder if I’d feel the same way about the 31st. I do not do well with scary movies (call me a wuss and I’ll probably agree), and I find all the hanging skeletons, headless bodies, and bloody cauldron decorations are more than slightly questionable. It just creeps me out.

And although I refrain from placing any type of Halloween decor outside or in, I do think that the idea behind the children’s side of Halloween is a fun thing. Dressing up as a favorite character, getting a bucket full of candy, what’s not to like about that? My husband and I have made a few unspoken rules about Halloween for our kids because I do want them to have fun in life, but I certainly do not want to entertain the idea that all the creepy stuff is a good thing.

So while we may not take our kids door to door to trick-or-treat, and I won’t ever dress my kids as a skeleton or witch, I will let them enjoy being a kiddo by dressing up as a fun character and attending a parent-approved local fall festival. And candy. Can’t forget that we’re getting candy.

Here are our kiddos all dressed up.

Cole-Addison costumes

And yes, I do realize that I said I wouldn’t dress my child as a witch. And yes, I also now realize that a pirate is probably just as bad, since all they do is steal things from other people. Who was it that said that hindsight is 20/20? Whoever is was, he’s probably right.

cole-pirate

On another note, did anyone every have makeup on when they dressed in a pirate costume as a kid? I’m pretty sure it’s mandatory now. My son’s fingernails were painted black too. Pure genius I tell you! Just don’t tell my husband, because he was under the assumption that pirates don’t paint their nails. I had to enlighten him.

In all seriousness, my children came home with a huge bucketful of candy each and I’m fairly certain that I have only a few hairs left on my head after all the candy eating and wildness going on around here in the form of two small children. So while you may enjoy this time of year, please remember to portion the candy. You’ll thank me.

Update: New surgery date and a wisecracking husband

This Halloween stuff is creeping me out lately. Is it just me?

Yesterday I took my daughter to Radio Shack to pick up a new power cord for my mini-dvd player. Oops, I mean it’s my children’s dvd player. My mom bought it for them for Christmas one year, so of course it belongs to them, despite the fact that I borrow it when they’ve hijacked my big flat screen in our living room. One must survive.

After buying the power cord for our mini-dvd player, we jump in the car and I’m slowly backing out, careful of the car to my left, when I see it. Dangling out of the back of the car’s closed trunk is a black pant leg and a very bloody foot. Eww!!

I’m a little embarrassed to admit that for a teeny-tiny-minuscule second, I debated what I should do. Call the cops? Wait. No idiot would kill someone and leave a foot dangling out the back. Besides. It’s not like a trunk could close on a bone like that anyway. If you tried slamming a trunk on a leg, the trunk lid would probably just pop back up. You’d have to slam seriously hard to actually break through a bone. Not that I thought about any of that. I of course just realized it was Halloween props, not rationalized why it was fake. Seriously.

On to more relevant facts. I had the appointment today with my ENT to figure out why my implant is having difficulties.

We arrive at the office, my husband, my mom, and I, to sit down and wait a while. Because we just love to do that. Not. We waited for over an hour past my appointment time before I was finally called for my CT scan. This scan turns out to be just as creepy as the foot. It’s true! You sit in a chair with your chin placed in a chin-holder-thing (sorry I’m no doctor) and have to be as absolutely still as possible. On top of that you have to keep your eyes closed. But you can feel the little scanning-pad-thing that moves around your head as it gets really close to you. It’s kinda like when you know someone is watching you, but you don’t turn and look. Yeah, creepy.

So I finish the scan and get to go sit in an exam room to…. what? Wait on the doctor. That’s right, you read it here first. We sit in the room for about another thirty minutes or so and eventually see my ENT. What I really don’t like most is that there is no clear definitive answer for what the problem is. While the CT scan did show that the implant hasn’t moved at all, my ENT only has theories.

The first theory is something that is pretty rare. It’s very possible that I have a thicker scalp near my neck than he originally thought when he placed the implant where he did. To fix this, there are two options. [Weak stomached individuals may want to skip the next few sentences] The first is that he can shave the scalp a little to thin it out in the area where my implant is. It’s risky in the fact that if you shave is too thin, the implant can tear through, and if that happened, it would have to be completely removed. The other option is that he can move the implant up a little and hope that my scalp is a little thinner as he moves it higher. It still has to be cautiously done so that he doesn’t move it to an area where my scalp is too thin. Either way, he’s confident that he can fix that problem (if that is the problem), since he has seen this once before. I won’t mention that my scalp was compared to a man who had folds of skin at the nape of his neck. Nor will I mention that my husband said that this gives him medical proof that I am thick-headed. I’ll keep those details to myself, thank you very much.

The other scenario, that I previously mentioned, is the implant could be faulty. My ENT doesn’t think this is the case, but I’m actually glad that he’s preparing for it just in case. On the day of my next surgery, a representative from Cochlear will be present during my surgery to test my implant. If it proves to be defective, he will also have a backup implant and my implant will be replaced. I’m certainly praying, believing, and hoping that this is not the case, but I also think it’s good to be prepared to fix the issue, in any possible way, during one surgery.

It kinda stinks that “the backup plan” wasn’t there during my first surgery, but this is such a very rare occurrence that it’s not typically required. I’ve never really been one to break the mold, so it’s a little ironic to me to think that it’s now that I do so. But that’s ok, because I know everything is going to go great this next time around.

My new surgery date is set for Monday, November 1st. Not far away, to be sure. My activation date will be the Wednesday before Thanksgiving, and thank God for that! Literally.

So while I’m certainly not looking forward to the anesthesia again, I’m very thankful that my goal, hearing during the holidays, is still tangible. We can do this peoples!

Another day of gray

When I woke up yesterday morning, I felt it. My body was a million pounds heavier, my eyes seemed too many days sleep deprived, and yet I knew it was all a lie. When depression hits, I’ve felt it’s burden so many times that I knew what I had to do.

I’ve heard people talk about depression before, whether from passing conversation or from a platform, and I sometimes wonder if half those people have actually experienced it in it’s unadulterated form. They say that being depressed is a choice that is made. It’s assumed that I can just snap my mind out of it by just making the choice to be happy. And I laugh! Oh how I laugh inside when people say that.

I experienced depression for years before I actually even realized what it was. It’s kind of weird that I didn’t realize what it was, but it’s true. I’d be overcome by this intense sadness, but I just didn’t really think about why or where it came from. I just bore it. Often I had a crummy mood, snapped at my husband or children or whoever was nearest, and never even thought about what was happening. But in a passing comment my husband he told me that when he came home from work, he never knew what mood I’d be in or if I’d be crying or not. Like any wife who’s scorned at, I probably came up with some sort of snarky response, but after I’d thought about what he said, I realized he was right. And like any wife, I did not particularly like that he was right. Who likes to be wrong?

But I decided to change. I’d felt our marriage had lost a lot of luster, but it never really occurred to me that I was the one with the problem. In my own mind, my husband was at fault because he didn’t understand all the turmoil that I went through, day after day. But he was right in the fact that I wasn’t controlling my emotions, but rather I was letting the emotions control me, leading me inevitably toward a path of constant depression.

So I tried to change. I attempted to stop being so snippy all the time, but more than anything I tried to be happy. I put on a brave front and created an attitude of happiness for my husband and children, sweeping all the unhappy feelings and sadness under a rug. But the thing is that it was still there. No matter how much you sweep under a rug, it’s never really gone. I did change a lot, and I created a much nicer, happier person, but it’s just impossible for me to be happy all of the time. Who ever is?

What my husband helped realize, more than anything, was what I was dealing with. It became a tangible, recognizable object that I gradually began seeing in myself. And over time, I’ve learned what the symptoms are, how to predict it, and how to pull out of it. I guess in theory that the “getting out of it” is a choice, but it’s much more than just a choice to be happy.

On days like yesterday, when I see that some situation that I’ve been in has brought depression with it, I’m very very proactive. I’ve always felt that I can’t really choose to be happy, but I can surround myself with happy people, places that bring joy, and before long I know I that it will all rub off on me. Filling my day with a flutter of activity helps keep my mind off the weight that threatens to drown me, and before long (usually about 24 hours) I’ve been pulled to the surface.

When I woke up yesterday morning and felt the oncoming depression, I made quick plans for the day. My son’s favorite thing to do at this time of year is to go to a pumpkin patch. And it just so happens that about an hour away, we have a patch that has free hay rides, hay mazes, horses and pigs for petting, things to climb on, and lots of photo opportunities.

cole-2000 addison-2000

When I’m around these two, I can’t help but find joy in the color they bring to my life. I love my family, and I thank God every day for all these that He has brought to my life. You may not ever feel the depression that deafness or a chronic illness might bring, but if you feel a little blue, like life is passing you by, don’t forget all those around you that love you. They can bring life and happiness to a dreary day, and don’t forget give God a wink, because it’s likely that He placed them beside you.

First attempt at Cochlear implant activation. Fail.

I don’t even know where to begin.

I think all of us, at some point, envision worst case scenarios. I can’t imagine losing a spouse or a child, but I take steps to prepare myself for such things. You know what I mean. We take out a life insurance policy for a spouse so that either of us are covered financially if something happens to one of us. We watch our kids closely around dangerous objects or in dangerous places, always cautious that a worst case scenario never happens.

But sometimes it does.

Today was such a big day for me. At nearly five weeks post-op, I went into my doctor’s office to have my Cochlear implant activated so that I can finally hear again. My dad and my sister have already received a Cochlear implant, and they hear so well that an average person probably wouldn’t know that they even had a hearing problem. They were with me today, in full support, along with my mom, my brother, and my husband. There were so many of us that we would hardly fit in the little bitty room where they had my new processor (the external hearing-aid-like thing that connects magnetically to the implant under the skin on my head) hooked up to a computer that will activate both the implant and processor. (view how it works here)

The technician handed me the processor, and helped me put the upper portion around my ear and attempted to place the lower portion, the magnet, lower down on my head. Ideally, the magnet that’s hooked to the processor will connect with the magnet that’s in my implant (which is under the skin). The processor magnet wouldn’t connect the side of my head where the implant magnet was underneath, but I really didn’t think much about it. On operation day, my hair was shaved in the area where the implant was placed, but it’s grown back considerably fast. So my thoughts were that it’s grown back so fast that they might have to cut it a little shorter in the area where the magnets need to connect.

The technician assured me that my hair probably wasn’t an issue and unscrewed the magnet attached to the processor and screwed in a stronger magnet. Depending on hair type and length (of if you even have any) a different magnet might be used. She started with a type four magnet, but quickly realized that she needed a five. She dug around through drawers, couldn’t find one, and paged another technician to help her. Between the two of them they realized that they didn’t have a five, but fortunately my sister had one on her processor. After switching out the magnets they found that even the five wasn’t strong enough.

Even though they could tell that the five wasn’t strong enough, they tried over and over to get the two magnets to connect. They found some scissors and cut my hair shorter where it had grown back, and kept trying to no avail. Eventually one of the technicians even got on the phone with the implant manufacturer to see if there was anything else to do to get them to connect. But we were grasping at straws.

The final suggestion was that my doctor might have to prescribe a stronger magnet. The technicians dug through the magnets once more just to be sure. They finally found a different processor with a type six magnet, although the processor was for a different type of implant. They tried the processor’s magnet on my implant, only to see if the magnet would connect, and it didn’t.

When they switched the first set of magnets, I internally had to check myself from getting emotional. I told myself that this was just something that happens, no big deal. But as the minutes ticked by and by the time the last magnet switch was made, I knew the problem wasn’t the type of magnet. There was something bigger that was wrong and the last attempt would inevitably fail. And when they tried to place that magnet on my head, the type six, and I felt it fall off, my thin hold on my emotions snapped. It was just impossible for me to contemplate returning home in the same condition I left. I couldn’t bare it.

I watched my mom slowly explain to me what the technicians had said would need to happen, all while tears streamed down my face. She explained to me that I would have to return on Wednesday, when my doctor will be in the office again, and undergo a CT scan to see if the implant has slipped from position or was put in backward. Worst case scenario, the implant is faulty and will have to be completely replaced.

I don’t really know what to hope for, or even what to pray for. I want to believe that the implant has simply just slipped position, but even with that, it means that I will have to undergo another surgery to put the implant back in place. So my thoughts and prayers are not even among these.

I pray today that whatever I face before me, God will give me the strength to get through it. At my doctor’s office, I stepped out of the room to try and gather my emotions, with my husband quickly at my side. The only words I could get from my mouth were that I just want to hear my children. I don’t care about anything else. Not the little unimportant things like music or laughter or conversation. I want to hear my children tell me about their day, about their favorite toy, and I want to hear their giggles of joy.

Beyond that? I want to be able to lay in bed at night and hear my husband tell me about his day. I remember after we were first married, it was the time I treasured most. It’s when all the television, dinner, phone conversations, and everything else have died with the day, and the quiet moments in intimate conversation about life begin. We shared goals and hopes and dreams, or even just things throughout the day that we loved or hated. More often than not, we acted like teenagers as we laughed at people or places, and I can’t begin to describe how I miss that.

So whatever happens beyond today, my thoughts remain focused on the goal ahead. One day soon I will hear. And whatever I have to do after Wednesday to get there, even another surgery, I know I will. And I will thank God every day for giving me the confidence and endurance to do it.

Waiting For Morning (My Cochlear Activation Date!)

It’s nearly here, isn’t it? I’m practically beside myself with emotions, but I can’t particularly name them.

After a very many years of living with a sever loss of hearing, and being deaf for over a year beyond that, I decided last year to have surgery for a Cochlear Implant (CI). With a lack of insurance, but using a federally funded state program, I’ve had to jump through hoops to actually have the surgery. But thirty days ago, ironically on my thirtieth birthday, my surgery was completed and after a grueling recovery, I am having my implant activated. The world as I know it will suddenly become a flurry of unimaginable sounds.

But I’m feeling a little weird about it all. Every year my husband and I go on vacation and today I’m experiencing what I’ve dubbed as that Pre-Vacation Syndrome, henceforth PVS. If you’ve never experienced PVS, let me enlighten you.

Vacation is supposed to be this relaxing adventure in search of new memories, but everything prior to that is anything but that. Packing up a family of four, with two children being young enough to go through a couple pairs of clean clothes a day, is one tough job. It requires having all of the laundry clean, dried, folded, and packed up in a suitcase in organized piles. And let’s be honest here. In my house, organized and laundry don’t typically happen in the same sentence.

My husband and I choose a location each year for a vacation for the two of us, and the children stay with my parents. It’s a tradition for the two of us that we have found helps us reconnect as a married couple, and we always recommend it to parents. Especially ones with small children who are rarely away from home. So vacation is important for us. And boy is it hard work to get to.

And I think that maybe this is why I’m experiencing PVS tonight. I feel like I’ve nearly pulled my hair out trying to get to this point, the activation of a piece of technology that will give me a vacation from the lack of sound that I face day after day. Now that vacation my “vacation” from deafness is finally here, now that the plans have come to fruition at long last, I’m just so stinkin’ tired that I don’t particularly have the energy for all that excitement I’m supposed to be feeling.

I’ve come to the conclusion that it’s ok. Every time we get to the actual day that vacation starts, when we’re on our way to the airport, everything seems to sink in and become real. Vacation becomes alive. So I know that tomorrow after the kids have been left with the sitter, when my husband and I are loaded up in the car traveling to our destination, it will all become clear in my head and I will realize what I’m traveling to.

I can’t even begin to imagine what I hear first, who I hear first, or what sound begins to be clearest. But I do know that although I’m not feeling excitement, I’m just so ready to hear my children. It’s a relief to know that I’ll hear them when they scrape a knee, when my three-year-old daughter slaps my four-year-old son across the face and he needs me, or even when she has had the bathroom water running so long I know the house is half flooded. And it’s overwhelming to think of all the giggles and laughter that will become clear when we have our ticklefests or pillowfights.

Maybe it’s not excitement, or could just be a delay in anticipation. Regardless of emotion, I know it’s time to finally hear.