Saturday, July 30, 2011

A lesson in humility...and a small update

First, I want to thank everyone for all of the amazing comments, get well cards and support you've given us. I'm truly grateful and humbled by it all. Thank you so much:)

Kyle and I went Friday to get my stitches out. Fi-na-lly. I wasn't quite sure what it meant, but I did know that it meant I wouldn't accidentally scrape them on the couch or touch them anymore. They ended up being long stitches because they had to go in, out, in since my skin was so weak from the first surgery. I didnt learn much, other than I still can't drive and I still can't really do much with Ella... 10 lb weight limit and all:( I thought all along that the weight limit was because the stitches you could see would pop. Nah. It's because they don't want to hurt the stitches that are holding the patch they sewed into my brain together. Well that's a horse of a different color. Why didn't you say that in the first place? For real. I would have taken them a little more seriously if I had known that. Anyways, here's a picture of my head with no stitches. Still have dirty hair, shaved hair and scrunchy pigtails, but it's an improvement. I go back to my neurosurgeon on Aug. 17 to talk about next steps and the chance for future infections.

Now, on to the bigger topic of this post. Kyle and our moms have been having to clean my stitches everyday for me. Bless their hearts. I've never had stitches before, and let me tell you what, they got gross. Scabby. My skin was growing over them. Luckily I couldn't get a good look at them, but I was smart enough to know it wasn't pretty.

And let me tell you something else, if it wasn't for Kyle, my mom and his mom, I don't know where I would be. They are the reason I got through this. The sisters pitched in, and the dads have been amazing too - taking care of the baby, stocking the fridge and just being supportive. I'm even expecting some yummies from our family's neighbor extraordinaire and extended family member Yvonne. But there are some things a girl would rather do with her mom. Between the stitches and the help I've needed with taking baths, brushing my teeth, managing my hair, discussions about diet and digestion, and basically all the tears I've cried from pure frustration, I am closer with my husband, my mom, my mother-in-law and my sisters than probably most people. Think about it...when was the last time your mom saw you completely naked? And I'm not talking undies. I mean completely naked. Me? Last week. I'm 28 years old, a wife and a mother, and my mother had to hold me up and bathe me for several days. That's love, people. And now that I'm a mommy, I totally get it. I would leap in front of a train for Ella. Giving her a bath is nothing.

This entire process (and I had to go through it twice) has been a lesson for me in faith and humility. Sometimes you just have to believe that things will get better, and sometimes you have to accept help, whether you want it or not. That's been hard for me, but I didn't have a choice. And they genuinely wanted to take care of me. I will never been able to repay them for what they have done for me, but as a mommy, I know there is no where else they would've rather been.

My parting words to you (for today): hug your moms, dads, babies, spouses, siblings and everyone who takes care of you. It's easy to do and something we take for granted. We can't always be all that we want to be when we want to be it, but if we are fortunate, there will be people there to help us get there. I'm almost there.

- Posted using BlogPress from my iPhone

Wednesday, July 20, 2011

Part Two - Brain Surgery Extravaganza:)

So onward and upward, or at least I thought. I got home on Saturday, and my first doctor's appointment was on Friday. I had good days and bad days. There were a few days when I was able to get up and walk down the hall. I still couldn't really lift my head. And I still needed help feeding myself on some days.

My mom helped me take a bath and brush my teeth every day. Kyle, my sister and his mom made sure I had everything else I needed. Brittney even gave me a squeaky ball to summon them when I needed them - worked like a charm:)

The best part about being stuck in bed was having someone to take naps with...

Kyle also refused to sleep in the bed with me because he was afraid he would throw himself about and hit me, so he put an air mattress in the floor next to my bed (he is still there now). Ella enjoyed the air mattress too.

Kyle checked my incision every day and cleaned it every night, and each night, it looked good. Until Thursday. Thursday was the worst day I had. I didn't get out of bed all day. I couldn't eat or talk. I was in immense pain and I had a pounding headache. On Thursday night, my incision started looking more red and it started to ooze. He and his mom looked at it and decided to call the doctor, who said that as long as it wasn't clear or bloody, then it was okay. He also said that since I had an appointment the next day, we could look at it then. My mom had gone home for the day, so Kyle called her and told her to come back.

Kyle took the baby to daycare, then I rode laying down in the backseat to the doctor, and Kyle and his mom practically had to carry me in. By the time we got to the doctor, my mom was already at my house, and said she would wait there until we told her what to do. At the office, I knew I needed to lay down or I would pass out. So Kyle's mom went and told the nurse that I needed to be taken back as soon as possible. So they came and got me and laid me on the table. The minute they started cutting into my stitches, infection started pouring out. The nurse said she didn't like the color, so she went and got a neurosurgeon resident (my neurosurgeon was out of town...of course), and he said that I immediately had to go to the hospital. He said that, from where he stood, there were three options: start on antibiotics and see what happens; do a spinal tap to see if the infection had penetrated my spinal fluid; or operate again and clean the infection out.

By the time I was admitted into the hospital, it had already been decided that they were going to operate again. So they rushed me back and started collecting my information. By the time my gown was on, my mom was there. Kyle and his mom had to leave to go get the baby at school, so mom stayed with me while they got my information and started getting my IVs in, taking bloodwork, trying to write down when I ate last and when I took my last meds. And then that was it. They wheeled me away. Same story as last time. Only this time, they weren't as generous with the hair shaving.

When I woke up, I was rolling down the hallway and I ran into my mom and Kyle. They put me into a regular room this time and my family filled the room. My mom and dad, Kyle, Brittney and Nick - everyone came pouring in. The pain this time was actually worse than the first time, so they kept me doped up on nausea medicine, morphine and percocet. They rotated valium in every once in a while. Again, I couldn't eat for a couple days, but this trip was complicated by the infection. After I woke up, a group of people from Infectious Diseases were in my room talking about how they were trying to isolate the bug that had caused my infection. They said that it was hospital-borne, meaning I had got it in the operating room. They said that it was superficial, and that it had not reached the dura graft on my brain, but it had gotten as close as possible. They said that once they determined the bug, they would be able to zone in on the antibiotics, but for now, I was getting a range of them. The doctor with Infectious Diseases then started talking to me. I asked her if they were going to be able to ge rid of the infection. She said yes, and then started asking me about my daughter - she asked me if my doctor and I had discussed her before deciding to have the surgery, why we decided to have it so soon and if my doctor and I had discussed waiting until my daughter was older before I had the surgery. So, my natural reaction in my doped up state was to ask her, "Am I going to die?" It was the first time, EVER, that I had ever let my fear show to anyone. And of course, my family was in the room and heard me. But when she started asking those kind of questions, I thought she was trying to tell me that I wasn't going to see my daughter grow up. She assured me I wasn't going to die - she said that she was just trying to bond with me because she had a baby too. Not smart, lady. Not smart.

After that, Kyle and my mom took turns staying the night with me, and it took about two days before I could eat or drink anything. Then, an amazing thing happened. Infectious Diseases identified the bacteria that had caused the infection, and they started me on antibiotics that targeted it. When I woke up the next morning, I sat up and ate chocolate pudding. No lie. It took two more days before I could get up and walk, use the restroom and work with physical therapy, but the turnaround was remarkable. I went in on Thursday and came home on Tuesday. And the difference between the last time and this time is incredible. Last time, I never got out of bed. Now, I spend part of the day in bed and part of the day sitting up (blogging!). My appetite has also returned. And I've been able to cut down on my meds. Instead of 2 percocet, I take one. And last night, my mom and Kyle's mom washed the front part of my hair. I can't wash it all because my stitches have to remain completely dry and can't get wet. But having the front part and my bangs clean made a huge difference. For a girl who washes her hair every day, going a whole month without washing my whole head is as close to torture as I can get. I'm making little strides here and there, but the best part, I get to see my baby. I still can't pick her up or carry her. I can't really even hold her. But someone will hold her next to me so that I can love on her and try to hug her. It hurts my heart that I can't wrap her up tightly, but seeing and touching her is enough for now.

She has grown so much. I just laid over her and cried when I got home. I missed her so, so much. She is saying "da-da," she loves oatmeal, and we fed her carrots for the first time last night.

When mommy got home:)

Playing footsies with mommy:)

We still have to keep an eye on my incision and watch for infection. Since my infection was so close to the brain graft, there is still a possibility that it could infect it, and then I would have to have the surgery over and they would have to replace the graft completely. It could even happen a year down the road. But I'm not going to worry about that right now. Absolutely nothing I can do about that.

But for now, all we do is wait. I will hopefully get my stitches out in 10-14 days and then I can wash my hair. Happy, happy, joy, joy. I've been through quite enough this year to last me a few years, and I hope and pray that God agrees that two brain surgeries is enough for this girl. And I hope he agrees that I've handled this the best way I knew how for everyone involved, and that he will heal me completely. And if there is anything else that I've learned, it's that I'm one blessed, loved and lucky girl.

And with that, I'm going to continue to heal, blog about my growing daughter and hopefully plan a beach trip very soon.

Thanks for taking the journey with me:)

TWO brain surgeries...and I'm still here! (Part 1)

That's right. Two. Not one. Two. In my last post, I told you about how I had been diagnosed with a chiari malformation and was going to need brain surgery to remove a piece of my skull and C1 vertebra and insert an artificial dura graft into the covering of the back of my brain. Much has happened since then, my friends, and let me tell you - it has not been all rainbows and lollipops. It sucked. Major.

I'm going to break this down into two parts for you - the first surgery and what happened when I got home, and then pick the second part up with the dr. visit that initiatied he second surgery.

June 30 was my last day of work. My partner-in-crime Mal and our amazing intern Ansley got into a great place - a place where I felt comfortable turning everything over to them. They are rockstars, and my to-do list had died a painful death thanks to my perserverance. The saddest moment of the day (and one of the highlights) was when they gave me two cards that were filled on the inside and back with messages from my coworkers. It reminded me why I love the people I work with so much. The other highlight of the day was flowers from my hubby - it was also our 4-year wedding anniversary. We have been together for 10 years, and I have to say right now, I never would have made it through this without him.

That brings me to another confession. I have gotten so many amazing comments from so many people commenting my positive attitude and insight. Some even called me inspirational. I've tried to be honest throughout my entire blog, and that's why I feel like it's necessary to tell you the truth. I'm not inspirational or special. I didn't handle this situation better than anyone else would have. To be completely honest - I have never been so scared in my entire life. Have you ever had to pray to God to just let you live, so that you could watch your daughter grow up and be a mother to her, to be a wife to an amazing man, to be around when your sister has her first child (she's not pregnant, by the way), to see your sister-in-law walk down the aisle (even if she says it's not happening until she's 30), to not make your parents go through the pain of losing their daughter? I have. I did. Many, many times. When I was home alone, I used to sit in Ella's room and just cry. I cried in the shower so many times, I lost count. I cried on the way home from work constantly. I even listened to country music. I hate country music. And you know what - The Band Perry can suck it. The rest of the truth is - I wanted so badly to believe everything that I said to everyone else. If I acted like it wasn't a big deal, then maybe it wouldn't be a big deal. The way that I was trying to handle it on the outside, the attitude that everyone else saw, I thought that if I put it out there enough, it would eventually happen - that I would eventually feel that way. The other reason is that I didn't want my family and dear friends to know how truly scared I was. I didn't want this to be any harder on them than it already was. My goal was for it to be as drama-free as possible, and for the most part, I think I achieved it. Until now, at least, since I'm spilling the beans. But it's ok, because I'm here. So no worries.

On to July 5- Surgery Day. I had to be at Emory hospital at 5:30 a.m., and I was my doctor's first patient of the day. I got up at 3:30 a.m.and washed and blew dry my hair because I knew it would be the last time for a while. Mom, Dad and Kyle went to the hospital with me, and Kyle's mom stayed at the house to be with Ella. When they called me back, Kyle went with me and helped me change into my gown. Then the anesthesiologists came in, one on each side, and began to explain everything that was going to happen. I was going to have a huge IV in each hand, plus an arterial line in my left hand. Once I was asleep, they would insert a breathing tube and shave my hair. They injected medicine into each hand to deaden it, and it hurt like a mo-fo.They then spent several minutes trying to find veins. Thanks to my mom's genes, I've got tiny veins. So they talked to me so that I would pay attention. The anethesiologist was able to get my A-line in pretty quickly, but they both had to dig in my hands for several minutes before they were able to get the IVs in. So long so that they had to inject more numbing medication.

I got to see my family one more time, and then the anesthesiologist resident wheeled me back into the OR. She asked if I had any questions. I told her that I just wanted to make it back to my baby. She said she would make sure of it. Next thing I knew, I was waking up to the same resident telling me where I was and that it was all over.

Me trying to inject a little humor into the Pippi Longstocking situation.

The first scar. The nurse said they were very generous with shaving my hair.

The surgery went as planned. They removed the bottom piece of bone from my skull and a piece of bone from my C1 vertebra. They then sliced open the dura, or the covering of my brain, and they sewed in an artificial graft that allowed it to stretch. This gave my super smart brain more room to grow and prosper. After surgery, they let Kyle come see me in recovery. The first 2 things I said to him: "I love you. I didn't die." Then they moved me to ICU, where my family was able to come in and visit me. My cousin Teresa even surprised me. It took me a few minutes for me to figure out who she was, but I remembered it brought a big smile to my face. I don't remember a whole lot, except that it was really hard to talk and I was dying to go to the bathroom. With the use of medical technology, the nurses were able to relieve me (I have a mental block when it comes to bedpans), and with the use of good drugs, there wasn't much time to talk - just sleep. Kyle spent the night with me in ICU (he had to stay in a family room connected to my room and wasn't allowed to sleep right in my room), and the next day my family returned.

The next day was harder. I was more alert, so I was in a LOT more pain. I couldn't lift my head, let alone turn it. I had to call the nurses every time I had to roll over. And the pain medicine immediately made me throw up. Do you know how bad it sucks to throw up when your head and neck are held together by stiches? I do.  I was also alert enough to know that I really had to use the restroom. The nurses decided to torture me and refused to give me a catheter. Sounds gross, I know, but with all the IV fluids going in me, my bladder was literally about to burst. Since bedpans and I don't mix, I knew the only choice was to get up. The other hurdle, though, is that with all the narcotics, I was hallucinating. I thought I was carrying on conversations and calling nurses, and I never was. Each time I called a nurse, it took me a while to figure out how to actually do it. I finally called a nurse and she helped me to the restroom. I've never been in so much pain.  My childbirth was nothing compared to feeling like my head was literally going to rip off my neck.  After I was able to do that, they decided to move me out of ICU and into NCCI.

Once there, my whole family was able to come in and stay with me. It also meant that physical therapy was able to come torture me for a while. I was only able to walk to the door and back to the bed before I needed to lay down. And just like with pregnancy, I was only able to lay on my side due to the nasty incision down the back of my head and neck. So my hips were in constant pain. The upside to the room was that people could stay in the room with me overnight. I am so fortunate that I was never alone. I always had at least two people with me at all times. Kyle and my mom stayed with me a few nights, and my mom and Brittney stayed with me a few nights so that Kyle could go home and see the baby. His mom and Allie stayed at our house with Ella the whole time so that we could keep her schedule in tact as much as possible. That was probably the hardest part about the entire experience. I hadn't been away from my baby girl for one night since she was born. And all of a sudden, I went days without seeing her. It was the lowest point I ever felt. I knew she was in good hands, and that helped, but I still missed her desperately. I just kept reminding myself that I had to get better for her.

It was hard to get a good night's sleep. I was calling for pain and nausea medication throughout the night, and nurses and techs were constantly coming in to take my blood pressure, temperature, heart rate, prick my finger to get my blood sugar and to take my blood for blood work. By the time I left, I looked like a bruised pin cusion.

The other problem was my appetite. I didn't eat or drink anything for more than 2 days, thus the IV fluids. Eventually, Kyle, Britt and Mom took turns feeding me bits of grapes, melon and bread. They also kept the lemon lime gatorade coming. It was about all I could handle. The upside - I lost 8 pounds:) Then as I got stronger, I was able to do more with PT - I even walked all the way down the hall and up and down a few steps. I even managed to take a bath. I know, sounds simple, but it wasn't. Not in the least. Once I was able to accomplish all these tasks, and my pain meds could be taken orally, they decided to release me.

My surgery was on Tuesday, and I was released on Saturday.

My stitches after a few days

That brings about Part 2. Coming up...