This Is Our Life...

6 years ago, when my husband was diagnosed with Chiari Malformation and Syringomyelia, I remember feeling this overwhelming sense of fear. To be told that the "other half of me" would be going in to brain surgery was a shock. I can remember the two of us standing in that neurosurgeon's office, listening to the doctor tell us that if he didn't have brain surgery immediately he could die soon because his brain stem was so compressed. I shook my head and silently fell apart on the inside. I kept telling myself to blink. Breathe. Just don't react in front of him. He needs me to be strong. I did most of my crying that night after he went to sleep. We had three babies at home, one brand new. I was angry and had no one to be angry at. I was scared and afraid to admit my fears aloud. I prayed and cried and begged and pleaded with God. That surgery was the longest 9 hours of my life. The complications with his heart, during and immediately after the brain surgery, caught me off guard. I spent the night of his surgery on the floor of his ICU room-watching his heart monitor as it climbed past 200 beats per minute. That moment, late in the night, when the cardiologist came to his room and told me to call in the rest of the family. That's something I still relive at night when I close my eyes. It was the first time I ever thought there was a possibility that I could have to leave that hospital without him. When they took him for heart surgery, seven days after brain surgery, I went numb. We had never heard of Chiari, never knew what a syrinx was, never knew that it was even possible for your skull to be so malformed that it could force your brain down below your foramen magnum into your spine. It was all so much to process at one time. I never imagined that life could go so pear-shaped as quickly as it did. I know I'm making it seem like this is all about me. I know it's not. I'm not the one that was diagnosed. I'm just the one left behind in the waiting room. You see, what people fail to realize is: when someone is sick, their illness doesn't just affect them, their illness affects everyone that loves them. For the last 6 years, my husband has been suffering, fighting, and living with a Chiari and Syringomyelia diagnosis. Our girls and I have been living it right along with him. We never know what our day will be like. Until he opens his eyes and rolls out of bed, we have no clue if he will be able to walk on his own or if I will have to walk him. Picture this, if you will. He is 6'2 and I am 5'1. He's so dizzy, slumped over with nausea, and his ears are ringing so loudly that I need to shout to be heard over the ringing. Except I can't shout because his headache is so severe that he's begging me to put him out of his misery. He doesn't mean it, but it hurts my heart to see him so miserable. This is years after his decompression surgery. His left side is numb and tingling. I hold his hand or rub his arm and he can't feel it thanks to extensive nerve damage. His vision blurs or his speech slurs. His words run together. He struggles with short-term memory. He get confused easily and often complains that he feels foggy or muddled. His permanent (left side) hearing loss makes it impossible for him to hear me when I'm sitting on that side, which is every time we are in the car on the way to his numerous appointments. I drive him everywhere because he doesn't drive. I do everything for this man that was once so capable, this man that once worked from before the sun came up until long after the sun had set. I miss him, the man that he used to be. When he's sleeping all day or in bed because moving from the bed to the living room was just too much for him to consider, I feel lonely for the energy he used to bring to the room. I want that back. I want him back. I want my memories to be his memories again. I don't want to be a Chiari wife. I don't want to be a Chiari mother either. Did I mention that? Chiari can be genetic. I thought I was floored to hear that diagnosis the first time. Hearing it a second time? With my child, my first born baby sitting in the chair beside me? Floored is not a strong enough description.
Now I live with a different kind of the same fear. How will this affect her life? How do I help her deal with this? How do I send my baby off to brain surgery? Will the other two eventually start having symptoms, too? What do I say to make her feel better on those days when she's scared or hurting? I don't know the answers. It hurts me to watch her struggle to grip a pencil because her numbness or weakness is in her right side. I have to fight back tears nearly every time she comes to me with a rapid heart rate, or headache, or "my foot feels like it's not there anymore, " or her eyes feel funny, or her neck hurts, or she's falling down because her balance is off, or she can't remember how to use a chair, or she's trying to tell me something funny and her words get all tied up, or.....her list of symptoms is growing so fast that I have to write it all down. Why am I sharing this? Because, people don't get it. This is our life. I don't want anyone to ever feel this feeling that I've lived with for the last 6 years. I don't want another mother, another wife, to sit in that exam room and hear this diagnosis. I want people to be aware that Chiari exists. Chiari doesn't play alone- it likes to bring it's friends.... Sleep Apnea, Arachnoiditis, Basilar Invagination, Ehlers Danlos syndrome, Hydrocephalus, Intracranial Hypertension, Scoliosis, Tethered Cord, Syringomyelia, loss of lordosis....just to name a few. We need awareness for Chiari and Syringomyelia- all these disorders that go along with it. We need research. We need to educate more medical professionals. We need support. We need to learn how to prevent this. We need a cure. As far as surgery is concerned? It may help slow progression, and some people may no longer have agonizing symptoms, but please please please understand that decompression surgery is NOT a cure!

Starting All Over Again:(

I'm sorry if this becomes a long, rambling post that makes no sense. I am struggling today. First, I would like to thank everyone for praying for Destiny when she was having her testing at ETCH and for praying with us as we waited for results/answers. Throughout the last several weeks, her daddy and I have prayed that we would get the results and be able to give our girl some answers as to why she feels the way she feels. At the same time, we have prayed that the tests didn't show anything at all. Let's be honest, no one wants something to pop up in a medical test, no matter how bad we want answers! With that being said, I can share that we now know that Destiny, like her daddy, has Chiari Malformation. I can't say I am surprised, as I looked at her scans when we came home that day. I have seen enough of Bobby's MRIs in the last several years that I feel confident that I could just about find Chiari in a MRI with my eyes closed (you know, if it was possible for me to see an MRI with my eyes closed!) I've learned that knowing your child has Chiari does not feel the same as KNOWING your child has Chiari. Talk about a sucker punch! Before the doctor said those words I could talk myself into believing that I was maybe wrong. I'm not a doctor. I'm not a radiologist. I'm just a Chiari wife who has spent the last 6 years learning everything I can about this illness that has consumed our life for the same amount of years. I've always known that knowledge is power and I won't feel as helpless if I show up to battle armed and ready to defeat the enemy. Even when, as is the case with Chiari, there is no definite way to defeat the enemy, no cure. Brain surgery is not a quick fix, but can "sometimes" help with the symptoms by relieving the pressure off of the brain stem. I have to admit that I don't want to do this again. I'm still overwhelmed with Bobby's multiple weekly/monthly appointments. We are still trudging through his Chiari nightmare. I don't want to start the uphill climb with my baby. I feel selfish saying this when I consider the fact that I am not the one with Chiari. I don't want more neurosurgeons, neurologists, ENTs, brain surgeries, or the like. I want to say "no, thank you, we already have our serving of Chiari!" It would be so wonderful if that was an option, but I seriously would not wish this on anyone else. We have made it through 6 years as a Chiari family and we will continue to muddle along. We will know more about our game plan (as far as treatment/surgery plans) after she has seen the neurosurgeon and neurologist. If this starts out anything like Bobby's, we will start with more testing. Please continue to keep our family in your prayers as we do what we can to take care of our girl and help her though what I know is a scary time for her.

Chiari Bites

I'm sorry that I've spent so much time lately avoiding my blog. I just really haven't had anything interesting to say. To be honest, I really haven't been much fun to be around!
I've spent the last few weeks watching all of Bobby's Chiari symptoms return....one by one until they are all back full force. The headaches bring him to his knees, the vertigo stops him in his tracks, the ringing in his ears has him gripping the sides of his head. He's even started passing out again. What worries me the most is his breathing and his heartrate though. His tachycardia and his chiari are connected because everytime his chiari symptoms return so does his rapid heart rate. Tachycardia is a symptom of Chiari, but Bobby also has ventricular tachycardia anyway. His heartrate is crazy enough without adding chiari symptoms to the mix. Friday he was standing in the kitchen talking to me one minute and the next minute he was silent. I looked up when I noticed that he had stopped talking-just in time to see him grab his chest and fall to the floor. He was pale and clammy. I kept shouting his name and asking him what was wrong but he didn't respond. I finally realized that I needed to call 911. Scared me AND the girls. We know that he's got an extremely elongated syrinx. It goes much further down his spine than it ever did before. We also know that before he had his surgery his oxygen was compromised because his brain stem was so compressed that it was cutting off a great deal of his oxygen supply. The most concerning for us after the decompression surgery was that the syrinx (from the syringomyelia) didn't fully drain like they expected it to. It has just continued to expand and elongate over time. He has way too much CSF. What we know now (after his most recent scans) is that the syrinx is going to need to be dealt with. He is also (most likely) going to need another decompression in the future.

I also know this.....we hate Chiari!

This Is Our Life

I have sat down with my laptop several times this week and attempted to write a post. I have so much to say, but very few words come to mind. Honestly, most of those words aren't really appropriate for a family blog. I have felt like the world is crashing in around us this week. Paisley is covered in poison ivy that is making her horribly whiny and uncomfortable, Delaney is having tummy issues (as usual), and Destiny cries ALL. THE. TIME. Bobby's Chiari symptoms are returning one at a time. This week, in addition to the back pain and swelling, he has had tinnitus and vertigo as well as some tingling in his legs, left arm, and fingers. It is certainly a reminder of how awful last summer was for all of us. I hope things start looking up soon. I hate to feel this way!
My goals right now are to give the girls as much of myself as possible. I am trying to focus on them and how I can make things better for them. We have been going about our summer days with as much normalcy as humanly possible. We've gone to therapy, doctor's visits, and played outside (that explains the poison ivy covering Paisley!!) as usual. Bobby's symptoms have had little-to-no affect on the girls this summer. I am hoping that it stays that way. They deserve a break from worry for awhile. It seems like the last 2 years have been fraught with worries, stress, illness, and grief. I want my girls to have normal lives for awhile. Lives that aren't centered around doctors and hospitals and mommy constantly crying. We've spent alot of our time in the pool this week. I've been taking lots of pictures of the girls at play. I think they've had a pretty good time. I only wish that Bobby felt like joining us in the pool for a little while. He's still struggling to work as much as he can. He's missed several full days of work and had to come home after half a day at work a few times also. I know it bothers him to "admit defeat" by staying home, but I tell him to look on the bright side....it gives him time to sit at home and look at beautiful, little ol' me! Ha! Our 9th anniversary is coming up in July and I am hoping that he is feeling a little better by then. I'd like to do something special for him on this anniversary because last year he was in ICU on our anniversay (one day out of heart surgery and 8 days out of brain surgery!) in a great deal of pain. He also spent his birthday (July 11)in ICU so I hope he will feel up to celebrating his bday this year. We certainly have a year's worth of memories to celebrate!
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
We've been seeing lots of progress with Delaney's therapy. Her Physical Therapy is really making a difference in her walking. She's learning to climb short steps and turn around to lower herself off of furniture. It's cute to see how determined she is when climbing those steps! Her little face gets all scrunched up with concentration. We've been doing strengthening exercises on her legs and torso. She's not really a big fan of that, and she lets me know it. I've discovered that she has a stubborn streak a mile wide. It doesn't matter how entertaining we try to make the exercises, she's still trying to escape. Instead of rambling on and on, I'll just post some pictures of my pretty girls.

♥ My sweet Laney turned 19 months old yesterday ♥
She weighs 21.7 pounds
She is 31 inches tall
Her head circ. is 16.24 inches
♥Destiny cheesin' it up in the pool♥
♥Walking with Sissy♥
♥Playing house♥
♥Paisley playing in the pool♥

A Year Ago Today....And Now

Exactly one year ago today, my husband was diagnosed with Chiari Malformation and Syringomyelia and we began preparing for an extended stay in the hospital so that he could have a Chiari Decompression and suboccipital laminectomy (brain surgery.) I wrote this in my journal the day after his diagnosis:

"If I could just stop crying, I know that it would be so much easier for him to deal with this. But I can't. I cried all day yesterday, all night last night, and woke up this morning crying like I've never cried before. I feel so afraid. I just don't know what I would do if we lost him. My little girls think the sun rises just for them and their daddy. They are who they are because of who he is. He is our whole heart. Without him I don't think any of us would ever smile again. My life would never be the same. I know his operation is a MUST. That after it, he should be able to live a nice, long, hopefully normal life. I just can't get the bad feelings out of my head. I have come to depend on him so much over the last 8 years. I have always had him beside of me in the hospitals, when the kids are sick. He's been my rock. I don't know how to be ME without him there to lean on. I try to pretend that I am the tough one, but it's a big show and he plays along to make me feel strong. We both know that he is the glue that keeps me from falling apart when the whole world is going to hell around me. Brain surgery is a scary thing to face and I know it's his body and not mine, going through it. I just know that it's my entire life on the line if things go horribly wrong. I have built my entire existence around loving that man for the rest of my life. He promised me a long time ago that we were going to live to be 148. I know it's silly, but I have always planned to make it as close to 148 as humanly possible with him growing old right beside me. I want this surgery to be a success so badly that I am almost afraid to even pray for it. I fear that God is angry with me for some reason. Bad things just keep happening. I pray that it stops and that our lives can get normal for a LONG while, but the bad things just keep coming. I know I need to stop thinking negative thoughts. I know in my mind, that I need to stay positive about his operation and recovery. It's just that a little part of my heart, deep down, is always thinking "what if?" and I'm off again playing this crying game. My heart aches like I've already lost him. If it hurts this bad to think about losing him.....I don't want to find out how much worse it would hurt if we really did lose him. Please God!!! I don't want to hurt like this anymore. Please, I need strength. I need him. Please don't take him from us."

I worked hard at hiding my fear from the girls, but at night, I would just fall apart. My journal became my confidant during those 13 LONG sleepless nights before his surgery. The night before his surgery I wrote this:

"Tonight was a very difficult night for us. In many ways, more difficult than any night we've had since the diagnosis. I am still very angry that this is happening and I can't get past it. I don't want to be this person I have become...angry all the time, mad at God and everyone that smiles and laughs and has a good time. Don't they know what we're going through? Do they even realize what all this means? The man I love is going into brain surgery in the morning and I don't even know if he'll make it out alive. I feel like someone is ripping my heart out of my chest! I hate this more than I can ever say with just words. I want to kick and scream and cry and beg for this to not be happening. We were laying in bed tonight and I was rubbing his arm, holding his hand, and playing with his wedding band. I kept thinking that tomorrow morning he'll be taking that wedding band off for the first time since I put it on his finger on our wedding day. It seems like that's the only thing that bothers him about the surgery. He doesn't want to remove his ring. I promised him I would wear his wedding band until the doctor says it's ok for him to wear it again, but he still doesn't want to take it off. I had been laying there in bed beside him for at least 30 minutes or so, just holding his hand and twisting his ring around on his finger, when I asked him if I was annoying him yet. He said no, why would you think that? I said, well it usually bothers you when I mess with your ring. He couldn't even tell that I was touching him! He has lost so much of the feeling in his left side that he had no idea that I was touching him at all! I feel like my heart is just breaking. I never imagined that there would ever come a day when my husband couldn't physically feel my touch anymore. I feel just so broken inside. Lord please guide the surgeon's hands tomorrow as he operates. Lord be near."

That time, a year ago, was like a never ending roller coaster ride for us. We kept waiting for the next bad thing to happen to our family. It hadn't been very long since Delaney was in the hospital and then Bobby was so very sick. I almost started to believe that God was punishing us for something. I kept telling myself that God doesn't give us anything He knows we can't handle, but it was getting so much harder to believe that. The idea of taking Bobby to the hospital and handing him over to a surgeon was just about more than I could mentally accept. I just couldn't allow myself to believe that everything was going to be okay. I felt so selfish for making the whole situation all about me, but I couldn't help myself. I had a very difficult time dealing with his diagnosis. In some ways, I guess you could say that I withdrew from life and just totally shut down. There were so many different emotions going through my mind all at once. Why now? Didn't God think we had suffered enough with Delaney's health problems? How was I going to explain this to Destiny and Paisley? Haven't we spent enough time in the hospital, with Delaney, away from my big girls? How long would we be spending in the hospital over this? How will we make it financially when he is the only one working? Was he going to die? We have 3 kids, what will I do without him? How will I take care of them alone? How can I keep living without him here beside me? How am I going to become super-mom and super-wife when I feel this broken?! Because that's how I felt-BROKEN. I knew I could depend on my parents and my sister to help me as much as they could. What I didn't know (but found out soon enough) was how hard his family was going to make my life. This surgery was not an optional thing and they really didn't want him to have the surgery. His mother is the kind of person that doesn't believe in medical intervention. She thought that he should place his trust in God and let God decide to heal him without the aid of surgery. His sister just became a crying mess. She invited him to her house (without inviting me to come along) and they all tried to talk him into not having the surgery. The neurosurgeon had said that he was quickly losing oxygen and would die in the very near future unless he had the surgery very soon. Not to mention the side effects he was having from the disease. They were horrible! When he went ahead with the surgery, as planned, they were pretty angry (that's putting it mildly!) that he sided with me over them. I felt very isolated during that time, so I started a journal. I needed a place to go so that I could vent my feelings, fears, and frustrations without having to defend myself. A friend suggested I start a blog. She thought it would be a good way to make friends while venting. She even suggested that I could possibly find others that could relate to how I was feeling and pray with me. I dismissed the idea at the time, and continued to write in my journal. Long story short, after his brain surgery on July 8, 2008 and his heart surgery (oh the drama!) on July 15, 2008 (yes, heart surgery 7 days after brain surgery!) I busied myself in caring for him and our 3 small children. I became mother and father to our girls as well as nurse to him. There really wasn't a lot that he could do himself. He was too weak and in too much pain to even dress or bathe on his own. I struggled to do everything alone for the first time in my life and it was hard. I never realized how much he helped me until he wasn't able to help me anymore. We had always handled everything as a team and suddenly, I was the only one capable of caring for all five of us. We went to his post-op appointments and he was gradually improving. We slowly found a new normal for us. He was a different person after the surgeries and it took me a long to time to come to terms with the fact that he was no longer the same on the inside. His behavior changed, his attitude changed, his thoughts were even different than before. I guess there's just something about being so close to death that changes a person's perspective on things. It was hard trying to keep up with the changes taking place in our lives.

My biggest misconception about his surgery was slowly revealed over the course of a few months. I thought that his decompression surgery was a cure for the disease. I never thought to ask. I just took for granted that the surgery=cure for him. When we went for his follow-up scans the neurosurgeon showed us the syrinx (pocket of cerebrospinal fluid) had not dissipated like we had hoped. In fact, it had elongated and now stretched half way down his spine. We were warned that eventually he would probably need to have the surgery again with a shunt to drain the extra fluid. We were stunned, to say the least. We didn't know and had never been told that there is NO CURE for Chiari. Bobby has had to change the way he lives his life. He has always been a hands-on kinda guy. His profession of choice has always been auto mechanics. He could take a car apart and put it back together again faster than anyone I've ever seen. Suddenly we were learning that the nerve damage to his left side was likely permanant. There was a very real chance that he may never be able to tightly grip a wrench (or any other tool for that matter) ever again. Without the use of his hands, what would he do? He healed over the next several months, but has never regained full strength or use of his hands. His grip will never be as firm as it once was, but he is at least able to do some of the same work he enjoys so very much. He returned to work in January 2009, almost 7 months after his diagnosis. It was life as usual for the most part. Until last week, when he hurt himself while attempting to lift something much heavier than he is allowed to try to lift. This was last night's journal entry:

"The house is dark and quiet as I write this. Our older girls have been sleeping for hours and our little one is snuggled up against me in our bed. Bobby is sleeping too, yet not sleeping quite as comfortably as everyone else seems to be. He doesn't toss and turn at all. It's the stiff set of his shoulders and back that gives away his discomfort. Not that he complains. He's likely dealt with worse pain in the last year or so. Still, I can tell that he hurts and I feel helpless because there is nothing I can do to help. Tomorrow, the pain will be worse for him, I'm sure. I see how swollen his spine looks from the outside. I can't begin to imagine what the inside looks like. His syrinx is elongated and now stretches 3/4 of the way down his spine. I wish it would just disappear. Almost all of his pre-surgery symptoms are returning, except the fainting (praise God!) I hate to see him so weak and worn. He tires so easily when he's symptomatic. The last few days have been hard on him. He knows better than to try heavy lifting(he's not supposed to lift more than 15 pounds), but sometimes there's just no way to stop him. He was always so independent before his surgery. I'm sure he gets tired of all my warnings and reminders. "Careful honey, remember your syrinx!" and "Don't lift that, you'll hurt yourself!" have become my mantra. He's constantly rolling his eyes at me. How I wish he had just listened. His neurosurgeon thinks his syrinx may have expanded further because of him not following doctor's orders. He will now have to go in for a MRI to find out the extent of the damage to his spinal cord. We may be looking at another hospital stay and a surgery for shunt placement to attempt to drain the cerebrospinal fluid. Lord be with us as we go down this familiar path again."

We don't know what's going to happen this time, but at least this path is a familiar one. No matter what, I will always be grateful for the neurosurgeon that diagnosed him quickly and operated so that we could have the last year together and hopefully many years to come. Bobby promised me that we would live to be 148. I don't know that we'll ever make it that long, but by the grace of God, I intend to make it as long as He lets us!

Update On My Girls

My Paisley finally got some rest. She looks so small in the great big bed.


Paisley was upset about the nurse having to give her a new IV line, so she gave Little Lamb one too.

Here I am again today, at the hospital with Paisley. She is not feeling any better. As of lunchtime, she was put on a constant oxygen. Her sats were just going too low to let her take breaks from the oxygen. She cries alot and it's so sad. I know she wants to go home and she misses her sisters. I got to cuddle with her alot last night. It's a shame we have to come to the hospital to get one-on-one time. I really hate to see her like this. The doctor changed some of her meds around. We are waiting on some new blood cultures to come back. I hope the results are good. She is now sleeping propped up because of the fluid in her lungs. I will try to update a little later tonight...depends on how she feels.

Destiny is doing OK today. She hasn't fainted at all today. We are waiting on the results of her last tests to come in and she may get to come home. The doctor isn't really doing anything for her anyway...just monitoring. They think the cause of the fainting is Chiari malformation, but that's not a definite diagnosis until we see the last scans. She is scared, but being remarkably strong. I'm proud of her. Cross your fingers that she can come home tomorrow.

Delaney is doing a bit better. They have her in a croup tent now. She is coughing and wheezing like crazy, but nothing seems to be loosening up?!? The nurses say she still has a strong pop and crackle sound in her chest, but the meds have to be helping because her skin color looks better than it did a few days ago. Hopefully, we can bring her home soon. Who knows?

Please keep praying. I'm exhausted and hungry, my spirits are a bit low, but I will survive.
Just trying to take care of my little ones. Will try to post more later.

Chiari Malformation

My husband has a condition chiari malformation. Below is information about that. He has had one brain operation already. Unfortunately, he has a rare type of Chiari that includes a "pocket" of fluid called a syrinx. he may need numerous operations just to maintain his basic functioning skills. There is not a cure for this and the surgeries are just maintenance. Please keep us in your prayers. We are afraid, but staying strong. The surgery he is has already had is called a "Chiari decompression and suboccipital laminectomy" to enlarge the opening in the back of the skull. This was done to help relieve pressure within the skull. He is now waiting to have surgery to look at the syrinx.

Definition of Chiari malformation is: Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when a portion of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Although Chiari malformation is uncommon, it's now diagnosed more frequently, largely due to improved imaging tests.
Chiari malformation is usually present at birth (congenital), but it can develop in some children after they are born. Signs and symptoms may not occur until adulthood.
Doctors categorize Chiari malformation into several types, depending on the amount of brain tissue that is pushed down into the spinal canal, and whether developmental abnormalities of the brain or spine are present. The more common types are less severe and involve less displaced tissue. Other types are rare and more severe.
Treatment for Chiari malformation depends on its severity and the characteristics of your condition.

Causes of this are: Chiari malformation occurs when the section of the skull containing the cerebellum is too small or is deformed, thus putting pressure on and crowding the brain. There's no clear cause of this misshapen skull.
When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brain stem can cause neurological signs or symptoms.

In Bobby's case, the symptoms were so severe that he lost all feeling in the left side of his body. We are not sure if all of the paralysis is permanent, but the doctor feels that the nerve damage will most likely prove to be permanent.

Looking Back

We went into Parkwest hospital on the morning of July 8th and we were nervous (of course) about the chiari decompression. The surgery was to begin at 8 am, but at 7 am, the people came to take him to holding for the surgery. I was fine until they came to get him. I had been told that I could stay with him from 6-8 am and then they would take him back and I would have to go wait in the waiting area. When they took him an hour earlier than planned I felt cheated out of my hour with him. I guess I'll just come right out and be honest. I was convinced that that would be my last 2 hours with him. I had talked myself into believing that he was going to die, and I had slowly started to fall apart before the surgery ever started. I went out to the waiting room and sat there ALONE for a few minutes. I was waiting for his family to show up. After about 20 minutes, the lady at the desk told me that my husband was in the holding room and was asking for me. I was so happy that they were letting me see him again! I went to the holding room to see him. They had put 2 more IV lines in his arms (making it a total of 3). One of the lines was an arterial line and they had strapped his arm down to this board. The nurse explained to me that the arterial line was not just an IV, but was also a moniter to track his blood pressure constantly while the surgery was going on. He was relaxed from the medication that they had given him, but he was still able to talk to me and know that I was there. I sat with him for a few minutes and told him how much I loved him and that I had asked God to guide his surgeons hands. After about 10 minutes, they came to take him away for surgery. I gave him one last hug and kiss and told him I love you again. As they were wheeling him away, the last thing I said to him was, "come back to me in one piece" and he told me he loved me too and promised that he would be ok and he would be back with me soon. I cried harder than I have ever cried in my life as the door shut and I was left there standing at the doors of the operating room alone. I was so lost! I went to wait for the surgery to be over.They came out and told me that the surgery started at 8 on the dot and that I would be waiting for at least 3 hours. The lady at the info desk came out every hour to let me know that everything was going fine in the O.R. I was living from hour to hour. Anxiously awaiting those hourly updates. His surgery ran for 6 hours! Finally, the lady came to get me. She took me to a room to wait for the surgeon to talk to me in private. When Dr. Ragland walked in I was holding my breath. He told me that Bobby was okay. He had made it through the surgery. They had cracked his skull, released the pressure on his brain, and removed bones C1 and C2 of his spine. But he was ALIVE! The doctor told me Bobby was still in surgery. They were cleaning him up and Dr. Ragland had to go back in there and stitch him up. I was told he would be in recovery for an hour and that I would be able to see him in ICU right after that . Three hours later. I was FINALLY allowed to see him! The nurse in ICU told me that after his surgery, his heart rate was really high and that they had given him a heart medication to lower it to normal rate and stablize him. She said it is normal to have a problem like this in a major surgery and not to worry. The had kept him in recovery longer just as a precautionary measure. I tip-toed into ICU room 7. He was laying on the bed. So still, with his hands at his side. I wanted to touch him. Make sure he was real. Make sure that this wasn't just a dream I was having and that he was really ok, really alive and in one piece like he had promised me. As I reached out to touch him, his eyes snapped open and he said, "Hello beautiful!" I was never so happy in my life! He was ok! A little loopy, but ALIVE! They let me stay with him for a few minutes, but then they made me leave. He begged them to let me stay, but the nurse said he needed his rest and he was in quite a bit of pain from the procedure. I was allowed to come back at the next visiting hour. At that visit I came in and sat with him while he slept, just holding his hand, being there, felt like heaven. We have always spent alot of time together and I am not very good at being alone. When the visit was over he begged the nurse to let me stay again, and again, she said no. As I was leaving the room, his heart rate went up REALLY high, REALLY FAST! It was at 170 when the nurse came to get me from the waiting room. She said that maybe I should come sit with him. It might calm him down and lower his rate. I was in there for about 5 minutes when the heart rate went back to normal speed. The nurse noticed as I was trying to leave that it started to rise again so she told me I could stay in the ICU with him and just spend the night. I was happy not to have to leave again, but I was also terrified about the heart rate increasing so suddenly. That night was horrible. His rate went up to over 200. They actually had to bring in the crash cart and a cardiologist. His rate went over 200 and stayed that way for over 4 hours! It was so fast that it was wearing his heart out. The cardiologist said it was causing a strain on his heart and that they may not be able to bring him back if he crashed again. I have never cried so hard in all my life. I just KNEW that he was going to die. They gave him this really high dose of a heart medication and it stabilized his heart rate (thank God) for the remainder of the early morning hours. At 5:30 pm the following day (July 9) they moved him out of ICU into a room on the neuro floor. This would be where he could try to rehabilitate. They wanted to get him sitting up in a chair and walking at least a few steps. We were up there until about 7 pm when all hell broke loose. His heart went crazy! We were just sitting there one minute and the next minute, his body was jerking off the bed. He was going into cardiac arrest and people came from all different directions. They gave him 3 different doses of his heart medicine before they were able to get his rate to a SAFE level. As soon as he was stable we were moved to the cardiac floor. The next 2 days (July 10 and 11) were awful. We never knew when his rate was going to go up. I was afraid to sleep. I was afraid not to sit beside him and watch him. I was so scared that I was going to look away for just a second and he would just be gone forever. July 11 was Bobby's 24th birthday and we were miserable. He was in the worst pain ever and the cardiologist came in to see us at 1:30 in the morning. He told us that Bobby's heart was wearing out and that it wouldn't be able to take much more of the strain and that our best option was heart surgery....immediately. So, exactly 1 week after brain surgery, Bobby went into heart surgery. I'll skip the drama of the 2 1/2 hour wait in the waiting room. He was brought back to his room on the cardiac floor after about 3 hours and (drum roll please!!!!!) the cardiac surgeon said that his surgery was a BIG SUCCESS!!! Finally, something goes right for a change. We stayed 9 days and were told we could go home and he could continue his recovery in the comfort of his own bed. So here we are. A little worse for the wear, but he kept his promise. We are together again and he is still in one piece. The pain is pretty intense and the surgery for the chiari malformation was not a cure (only a treatment), but at least it gave him more time. Time to spend doing ANYTHING! the things he never would have been able to do had it not been for the doctors that worked so hard to save him for me. We are extremely blessed in ways that simple words can not ever convey. We are now living one day at a time...enjoying whatever we do together as a family. This experience has made me learn to appreciate "the little things" he has always done to help me around the house. I am having to perform the mundane tasks alone and I am looking forward to the hope that maybe one day he will feel better and the "new" life we are hoping to have will finally be reality. However, if he continues to suffer the symptoms of this incurable disease, I am fully prepared to take care of him everyday for the rest of our lives. I am just grateful to have him by my side again! Proof positive that there IS a God. We made it through this obstacle TOGETHER - we can make it through anything!

A New Year, A New Beginning

I've heard that blogging is good therapy for some people. I don't know for sure if that will hold true for me, but I figured I might as well give it a shot anyway. I guess for starters I could provide a little background. My husband and have been married for over eight years now. We have three beautiful little girls. Destiny is our oldest. She is a sweet little freckle-nosed seven year old. Paisley is our fair-skinned, blond haired five year old. She is a ball of energy with a smile that would put the sun to shame. Delaney (or Laneybug as I affectionately call her) is the baby. Our own little miracle. All three are precious, little gifts from God and we are lucky enough to be the ones to care for them here on Earth. That being said, Welcome to......

My new blog where I will attempt to post about my new life as a Chiari wife and the mom of 2 beautiful big girls and one "tiny" baby girl. Join my on my journey to self discovery, as I attempt to cope with the life God has given me.

My husband has a disease called Chiari Malformation. He was diagnosed on June 23, 2008. On July 3 we pre-registered him at the hospital, and on July 8, 2008 my husband had brain surgery. My whole world felt like it was crashing down around me. He is doing okay right now (6 months later), but our lives are changed forever and I have a hard time dealing with that. He will live with this the rest of his life and there is not a cure. Our faith in God has not wavered. We put our worry HIS hands and I am confident that things will turn out OK. We are blessed to have had the last 6 months to be a family. We don't know how long my husband has, but we are most definitely going to make the most of it.

This blog is basically my place to vent.....worries, feelings, thoughts, anything I feel like writing. I don't know that anyone will ever read it (besides me) but that's not why I'm writing it anyway. It's just nice not to have to keep it all bottled up anymore.