A horrible rollar coaster in my never ending nightmare

Some of you have heard some or part of the news and for others this may be new. But I wanted to pass along a health update of what has transpired over the last week - and my subject line says it all!

Last Wednesday, I met with my surgeon and he decided to move forward with my surgery to move the part of my skull from my stomach back to where it belongs.I had an infection on my scar and he  said it would be easier to go ahead and fix the skull while he fixed the infection. I was a little excited but overwhelmed that things were happening so quickly.

Then all things changed. I woke up on Friday morning with a horrible, horrible headache (and for a brief time I wasn't responding correctly (I could think of the answers, but they weren't coming out of my mouth.) Thinking that I could be having another stroke, I was rushed to the ER where I hung out in almost all day. I had tons of fevers, topping out at 103. My surgeon decided to admitted me and move forward with the surgery as soon as he could (I needed to come off the blood thiner in order to have the surgery so the date was set to Wednesday). While in the ER I went through tons of tests including a MRI, MRV and a spinal tap.

On Saturday morning, it looked like things were moving fine toward the surgery, but then someone from infections disease came by my room. Apparently they took a culture of the infection on my head and discovered that it had developed into a staph infection - what type they didn't know, but they put me on strong meds and put me in solitary confinement. Whoever came into my room had to wear a gown and gloves. On Sunday they found out it wasn't the bad staph infection like mersha, which was the good news, but decided to post-pone my surgery for a couple weeks. I was super upset but though I still had good relationship with my surgeon and he'd still move forward (he was out of town all weekend). 

On Monday I met with him that afternoon and he said it was my decision but he'd be willing to move forward with the surgery. He'd clean up the part that had the staph infection - which turned out to be superficial, then move forward with the surgery, or I could chose to wait. I liked the idea of moving forward - I'm reading to have this all behind me.

But today has been hell!!! Apparently my neurologist and infections disease doctors went ahead and moved forward with a plan to focus on the infection for another 2 weeks, then start considering the surgery. Their actions basically tied the hands of my surgeon - he basically lost the lead in my treatment. He could move forward but it could put his career in jeopardy. I could tell he wasn't happy when he came in my room, and he know he'd be upset. But he did promise that he wasn't leaving me and he would be the one to do my surgery. A few hours later I met with my neurologist. He said he felt the need to come and personally explain why they changed things cause he knew I would be upset and not agree.

So it looks like I might be going home on Wednesday - which I so ready to get out of this place as I'm going a lil crazy.  But it's also frustrating knowing that I'll have to come back another time to get everything complete. Will this nightmare ever end?

As as I said in my subject line - these last few days has been a horrible rollar coaster. Just a few as I got excited about the good things ahead, everything would fall down and I had another huge hill to climb. I have cried more tears these last for days than I can remember. Tears are rolling down my face as I write this e-mail. I'm past putting on a happy face - I just don't have the energy to do that.

And I'm sorry if I haven't responded to your text, phone call or e-mail. Part of me doesn't know what to say, and in many cases I don't know what to say. I feel disappointed, I feel let down and I feel defeated. 

And as I told my parents, I also don't know how to pray right now. Besides screaming out - God why? - nothing else seems to sum up my thoughts and emotions. I'm thankful that I have dozens of friends and family standing in the game for me, serving as intercessory prayer warriors for me. But this has been a huge trial of my faith. Just when I think things are getting better, I feel slammed back to the group. Hopefully one day, probably years from now, this will make sense. But right now it is just a nightmare.

I'm sorry if this is the first time you are hearing this news, but thank you for your continued support.

So long 2011...

It’s New Year’s Eve, and I’m getting ready to go watch my Auburn Tigers take on the University of Virginia at the Chick-fil-a Bowl in Atlanta. I’m hoping that 2011 will end on a high note. For me personally, this year started off as a year filled with extreme highs, but unfortunately it ended with extreme lows.

Lets start with the good stuff – a glass half full mentality.

The year started off with a trip to Arizona to watch Auburn win a National Championship. As a life long Auburn fan, it was a special moment to be part off – especially since we flew out to Arizona without tickets yet got face value club level seats from will-call right at the game started. Thank you January snowstorm that forced many Auburn fans to stay stuck in the south!

The next big highlight was a trip to Hawaii with my best friend Elise in April. We hung out with her cousin, visited Pearl Harbor and sat on the beach for hours ready books. It was probably the most relaxing vacation I’ve ever been on in my life.

A countless highlight of my year was watching my friends get married. I’m not quite sure how many weddings I went to this year – but it was awesome to watch my guy friends stand at the end of the aisle and watch their lovely wife walk down the aisle, or see the huge smile on my girl friends faces as they walked down the aisle in their beautiful dresses toward their husbands. Congrats to all of them!

And probably the biggest highlight of the year was the birth of my nephew – Clark Franklin Hungerford III, known as Tripp. His life started on a low note as he was born 6 weeks pre-mature and spent about 2 weeks in the NICU. But now he’s doing great, and is loved so much by his “Auntie.” Just writing about him makes me smile.

Now to the extreme low of my year – the biggest fight of my life. Better said – a fight to stay alive.

After a brief stay in the hospital due to a Crohn’s flare-up in early September, I quickly returned to the hospital after having a stroke. Why I had a stroke - no one knows. I spent almost a month in the hospital, and at one point had emergency brain surgery to remove a part of my skull (don’t worry – I still have it in save keeping in my stomach!).  The physical recovery has been slow but impressive. The emotional recovery has not – I still fall asleep asking God why or reliving everything I’ve been through. None of it makes sense, and my old life feels like it has slipped away forever.

But as I struggle every day because of this low – I know that I am surrounded by countless family, friends and strangers who are interceding on my behalf. They are the reason I’m fighting every day to keep improving!

So my goal is to end 2011 on a high note – an Auburn victory. And hopefully I’ll begin 2012 on a high note too. I meet with all three of my doctors the first week, and fingers crossed; we’ll be talking about a surgery date to but my skull on my head.

I’ll keep everyone posted on that. But until then, Happy New Year and War Eagle!!!!

My version of Grey's Anatomy

Many of you know that one of my favorite TV shows right now is Grey's Anatomy. Even with all the stuff I've been through recently, I still love the show. So I figured I would introduce all my doctors based on the Grey's Anatomy they're most like:

Let's start with my version of Dr. Izzie Stevens - that would be PA. Kim. She's the one that does my weekly finger prick to check my blood level. Despite the fact that my blood level has rarely stayed between 2-3 like they want it to, she always has a positive attitude. She's also extremely committed to making sure I'm taking the right level of blood thinner.

The second is Dr. George O'Malley  - that is Dr. Gould, who is the doctor that leads my blood thinner treatment (basically PA Kim's boss). Like George, Dr. Gould is pretty quite and calm when meeting with patients. His passion for medicine is revealed in his own way which he is honest with the patient. He shows a great commitment and respect to his patient. This is really comforting when much of what you're hearing may be overwhelming or confusing.

And then you have Dr. Miranda Bailey - this is Dr. M. Andrews. He technically not my doctor, but is a close family friend and is one of the hire-ups at Wellstar. On Grey's, when something needed to be done for a patient and doctors need to do their job, Dr. Bailey gets called in. And she makes things happen. Dr. Andrews was that person for me. He would check on me regularly and continues to follow up to make sure I'm on the right path.

And then we have a Dr. Christina Yang - who is my Chrons Dr. Ballard. Just as Christina is extremely committed to her specialty of cardiac on Grey's Anatomy, Dr. Ballard is committed to GI issues like Crohns. He is soooo smart, and he is also very open and honest about my Chrons disease and options to treat it. And while Christina is sometimes considered a robot, she does have a soft spot and is open to what the patient wants. So is Dr. Ballard.

The next one is Chief Richard Webber - that would be the lead doctor in all of this Dr. Hormes, a neurologist. He is the one that brings the team of doctors together to figure out the best treatment plan for me. He's also committed to figure out exactly what happened to me. When I was in the hospital, he would stop by my room almost every day, even days he wasn't working. He's discussed my case (not reveling my name though) at national conventions, and is interested in doing a case study on my ordeal to hopefully prevent this from happen to another young, healthy adult. Dr. Hormes is also so wise, and is willing to sit and answer any and all of my questions (even if they're silly, like when I asked if I could attend a friends wedding in St. Simons shortly after I was released from the hospital).

I also have a Dr. Lexie Grey - my general practitioner, Dr. K. Andrews. I've been seeing her for many years, and just like Lexie is, I'm pretty sure Dr. Andrews has a photographic memory. No matter what I come into her office with - fever, cold symptoms, stomach ache - she can almost diagnose you immediately with the symptoms you present.

And finally, I have a McDreamy (aka Derek Shepherd). Dr Hill, my neuro-surgeon (surprise, surprise), is quite an attractive doctor. And I really enjoy when I go see him. We kind of have a love/hate relationship, so we joke back and forth every time I have to go see him. In addition to his appearance connection with McDreamy, he is also medically like him too. He is committed to making the best decisions about when and how to do surgeries to benefit the patient. And he is willing to hold off or say no to surgery dates because he believes its the best for the patient. The only difference between the two is hair. Derek Shepherd has really attractive hair on the show - Dr. Hill on the other had gave me a horrible hair cut when he had to shave part of my hair for my emergency surgery. I've yet to let him live that down ;)

Hope you guys enjoyed this blog - and hopefully my doctors won't be upset with who I compared them too.

26 positives of the last year

With my 27th birthday being tomorrow, I figured I would write today's blog about all the positives that happened while I was 26. The last three months have been horrible with all my health issues, but there have been many positives so here it goes. They're in no specific order, except some really important ones are at the top :)

1. Birth of my first nephew Clark Franklin "Tripp" Hungerford on Aug. 9. After a short stay in the NICU, he's now a growing boy who loves his "Auntie"
2. Auburn football wins the National Championship in January. Even though we flew out to Arizona for the game without tickets, we were able to buy club level tickets for face value at will-call due to so many folks being stuck in Alabama/Georgia do to a snow storm
3. A week long trip to Hawaii with my best friend Elise in April. We were able to connect with her cousin and one of our missionary friends. It was such a relaxing vacation, and I loved exploring all the different beaches
4. My first snow white Christmas: We had a beautiful, snowy Christmas this year. It was beautiful and fun to play in
5. Summer Camp 2011 with my rising 9th grade girls at Riverstone
6. Adopting my first puppy - Isabelle. She is a pure bread English Springer Spaniel, and will be 8 months at the end of November. She is making writing this blog difficult as she keeps jumping in my lap as I type. She is still very much puppy!
7. Watching Auburn come back from a 24 point def. against Alabama to go onto the SEC Championship
8. Attending the 2010 SEC Championship
9. Being a bridesmaid in Erin Sutton's wedding in January
10. Attending the following other weddings: Kelli Kite, Kimberly Kite, Matt Stafford, David and Stayce Van Gorp
11. Being asked to chair the communications and technology day for the current Leadership Cobb class
12. Hanging out with my "lil boyfriend" Thomas Egan several times. He may be just over a year old, but I love that little guy
13. Meeting with my accountability group from church. It's always fun and supportive to get together with Maria, Elisa and Kimberly
14. Serving on the steering committee for the Cobb Chamber ACES program
15. Being a small group leader for my girls at Riverstone Church
16. Working with United Way as the Cobb Development officer and raising over $7 million to help those in need
17. Going on a trip to the outlet malls with Jessica A. and Elizabeth S. (we've planned a better strategy for our next trip)
18. Multiple trips to Dang Nails to get pedicures with my mom, sister-in-law and friends
19. Going to see the movie "The Help" with a group of girl friends and our moms. Great book and great movie
20. Several "Clique" get together with my girls from Auburn. Some were all four of us, others we're just part of the "Clique" but we stayed in touch
21. Spending a weekend with Elise to see her new place in Rome, GA followed by a Superbowl party at David and Stayce's house in Cartersville
22. Going to Clemson in April to attend the annual JLF Golf Tournament. My family let me play a little during the tournament
23. Hosting a baby shower for Jessica and my lil nephew Tripp
24. Attending a two Braves game. One in the upper deck with friends from church and one in the club level sweet with Gas South (it was a thank you event for non-profits)
25. Going on a short road trip to St. Simons with my mom
26. Finding out how fantastic my friends and family are as they've come to my support through these most recent challenge.

Now, here's to a great year of being 27!!!!

Delay of game leaves me disappointed, discouraged, upset and angry

I had hoped this blog would have been super positive. I thought it would be something to the effect of a surgery date has been set and my skull piece will be returned to my head shortly. Basically I was hoping that I would get the one and only thing I wanted for Christmas this year. Unfortunately, that isn't going to happen.

For a while I thought the surgery would happen in early/mid December. I meet with my neurologist, who is the lead doctor of my three doctors, on Nov. 11 after having a MRI the week before. The short of that visit was he had decided to move to plan B: meaning he was going to keep me on the blood thinner for 6 months but thought it would be ok to temporarily take me off the blood thiner to have the surgery in December. The MRI showed that the swelling of my brain has gone down but the vein where the blood clot was still hasn't opened back up as much as the doctors wanted. Basically - the blood clot was there, but he was willing to talk to my surgeon and by the time Christmas got here, my skull would be back to how it should be.

We all got really encouraged when my surgeon's office called to set up an appointment to talk about my surgery on Wednesday. For the first time, I was excited to go to a doctors appointment and I was really encouraged that this recovery process would finally starting to speed up, meaning I was close to returning to my normal self.

Unfortunately that isn't what happened: instead of surgery coming soon, it's been delayed.

I love my surgeon - we kind of have a love/hate relationship that started when he did a horrible job shaving my hair before the first surgery. He says I shouldn't be too upset as that was emergency surgery and my hair style wasn't as important as them getting in quickly. And he knew what he was going to tell me was going to be disappointing and make me upset - but he said it was in my best interest.

Basically what he said was he does not fill comfortable performing the surgery until my vein opens up more and the clot is gone. Pretty much returning to plan A = 3 months from when I left the hospital. The surgery we're talking about is putting the skull piece they removed back where it belongs - and what's crazy is it's considered an "elective" surgery. My surgeon said some patients never have anything put back in their head, but he said because of my young age and active lifestyle, he suggested I go through with the surgery - but wait.

He is worry about doing the surgery so soon is he doesn't want to go ahead and do the surgery and then the clot gets big again. He said I've gone so far already, he would hate for me to have to basically start all over. He wants to meet with me again in six weeks, after I have another MRI (which they called to tell me the date while I was writing this), and then we'll set a date surgery date for January depending on the MRI.

Physically and medically I value my surgeon's reasoning for delaying the surgeon. He's the one who is ultimately responsible, and it makes medical sense. As my dad said, if we wait until my head is ready for the surgery we go from kicking the field goal to making the touchdown.

But personally and emotionally - I'm disappointed, discouraged, upset, angry and a couple more things that aren't appropriate to write in a blog. Sometimes I feel like I take one step forward and two steps back. None of what happened and continues to happen to me makes any sense.

I have more questions than I do answers - both from my doctors and from God. I replay in my head everything that lead up to the stroke and what I can remember from my time at the hospital.

And while I haven't given up on God - my faith has totally be tested/challenged/questioned more than anything in my life. While I am surrounded by amazing friends and family - part of me feels very alone in all of this. While they all support, encourage and love me, I ultimately have to do this myself. And despite all my prayers, pleads and tears, talking with God is really hard right now. This whole thing just feels like the never ending story or a horrible nightmare I can't wake up from.

Everyone, including my doctors, say one day I'll be back to my normal self, just right now I'm not there yet - and my lack of patience doesn't help. One day I'll get there, but this delay of game is hard to take in right now.

With everything going on pregnancy and motherhood sound like a breeze

Ok before any rumors get started or my parents have a heart attach over this title - no I am not pregnant, trying to become pregnant or even thinking about having a kid anytime soon.

There is a two- part explanation to this headline.
1. My health issues and recovery covers the pregnancy part
2. My 7 month old puppy named Isabelle covers the motherhood part

Part 1:
As I've mentioned in several other blogs, one of the hardest thing for my recovery from the stroke and brain surgery is having a part of my skull in my stomach. It is completely uncomfortable because it moves; finding closes that actually and are comfortable is impossible; tons of people have asked to see my scare where my skull is hanging out and/or ask to touch it. As I tell this to my sister-in-law, who just gave birth in August to my nephew, she said a lot of what I'm experiencing reminders her of her pregnancy. And several people have suggested I look at maternity pants cause they'll fit the best - don't know if I'm willing to make that lead yet.

Another issues that people said relate to pregnant women is sleeping. I have always pretty much slept on my left side. It's how I like to sleep. Guess where my brain was cut open and where my skull piece is now living? If you guessed my left side then your correct. So now I try to sleep on my right side or my back (which I hate). Almost every morning I've woken up with my head slightly swollen again because at some point during the night I have rolled over onto my left side without realizing it. My sister-in-law has offered to let me borrow her pregnancy pillow so I don't roll over.

Those are the major items regarding part 1.

Now part 2 - motherhood
In May, I got a pure-bred English Spring Spaniel puppy I named Isabelle. She is a beautiful dog and is super sweet - when she wants to be. She is also very smart, very friendly very mischievous, very fast, very playful, very snuggly and we're pretty sure she's the alfa dog of her litter.

Prior to my health issues, I worked hard (including going to training at a pet place in east Cobb) on getting her potty trained and respondent to commands. After I went to the hospital, my younger brother Blake, took Isabelle to Birmingham with him. He kept Isabelle for about 2 months and really kept up the training with her. My dad and I went and picked Isabelle up about 2 weeks ago, as Blake is a law student and needed to start studying for finals. So I've been at my parents house since we picked her up since I still don't have the strength to keep her by myself.

Now she was good for a couple days we got her back - but now she is testing the limits and since this past Saturday has been a little puppy brat!
-She's taken a bit out of mom's dinner when she walked away from the table to get a napkin
-Popped inside the house countless times
-Chewed on shoes, pillows, blankets, trash, etc
-Jumps on everybody
-Tries to chew on people
-jumped up on top of the kitchen table
-drank out of the toilet
These are just of a few of the things she's done. Her most recent bratty thing is refusing to come back in the house when let out to play or go to the bathroom. One day this week, my dad was late to work because he couldn't get her inside. And this morning was horrible. While I was out there with her, she chased after 3 kids who were walking to the bus stop (which is 4 houses down from my parents), chased after 2 cars and just ran around through our neighbors yards. Every time I would get close to her, she would thin dart off, like we were playing a game of chase. After about 45 min., and using a treat as a distraction (I know that's wrong but it was freezing out side and I was exhausted), I was finally able to put a leash on her and get her inside. She spent 30 minutes in the bathroom, which is her new time-out spot. And for the next couple of days she's only allowed outside on her leash.

I feel like Isabelle is like a 2-year-old child - she can drive me nuts and make me so angry, but at the end of the day I love her.

So with everything involved in part one and part two of this blog, I really think pregnancy and motherhood sound like a breeze :)

 Here are two photos of Isabelle. The first is when I first got her and she was soo small. And then the second is a more recent photo:

A big prayer request on my upcoming MRI

Tonight's blog is really more of a prayer request than an update on how I'm doing. The reason is on Friday I am having an MRI and it can determine when I can have my next surgery to put my skull back on my head. And having that surgery is really all I want right now!!!!

My MRI is at 8:30 a.m. and will last about an hour. The test is really loud and could easily cause me to have a bad headache the rest of the day.

What I'm hoping with tomorrow's test is that it shows that the swelling of my brain has gone down, the clot on my brain is no longer bleeding and I can come off the blood thiner. My surgeon won't do the surgery to put my skull back where it belongs until I've been off the blood thiner for 2 weeks. He said he thinks the surgery will be after Christmas or first of the year. I'm hoping it will be my Christmas gift :)

Many of you have heard me complain about having part of my skull in my stomach. While it's kind of cool to know that my skull is chilling in my stomach - basically staying safe until they can put it back in my head. Having part of your skull in your stomach is sooo uncomfortable. It hurts, it moves all the time, it makes sitting still impossible, sleeping is difficult...I'm ready for my surgeon to put everything back to normal.

And I'm very nervous about tomorrow's MRI. I just fill like I've had a lot of bad luck recently, and I'm worried that my luck streak isn't going to improve anytime soon. I wonder how long I'm going to have to wait to have the surgery. Today, Thursday, I went to have my weekly finger prick so they can check my blood level. They typically want it to fall between 2-3. But the last two weeks it's dropped, with today's being a 1.6. Every time it drops they have to figure out a new dose of the blood thiner, and they can't figure out why it keeps dropping. I was hoping for a good results from my weekly finger prick, thinking it would calm me down about the MRI. But now I'm very anxious, nervous and worried about the MRI.

The test is tomorrow, Friday, but we won't meet with the doctor until Nov. 11. So I will have to wait at least a week to see if we're close to setting a date for the surgery. The surgery one of those big things in my long recovery and just setting a date seems impossible.

I know I'm learning a lot about patience right now, but that's not going so well. I really just want God to give me a break and answer my continuous question of why did all of this happen to me. People have constantly told me about how my experience will be a great testimony and God has great things in store for me because of this. But right now that is really hard to fully believe. I'm overwhelmed, angry, scared, hurting and just have more unanswered questions for God than answered ones. This is why I'm asking for your prayers for tomorrow's MRI. I feel like every time I take a step forward in recovery I take several steps back. And positive MRI results will help move me forward and hopefully turn my luck around.