One Bite at a Time

It's taken me a some time to write this entry. I've been really worn out - but I guess that comes with recovery. Here's a little update on what has happened since I last wrote.

First of all, the surgery was successful! Everything is structurally okay, but the challenge that we are trying to overcome currently is the function of my digestive system. It has been so long since my GI tract has actually been able to function in the right way (because things were so structurally wrong with it before surgery), so we are trying to figure some of this stuff out.   

Four or five days after surgery, I began throwing up again.  This might be TMI so skip ahead of this paragraph if you don't want to read it. We discovered that there were 2 liters of BILE being dumped into my stomach when I began to violently throw up. It was terrible. AND if you don't know, there isn't supposed to be ANY bile in the stomach - especially NOT 2 entire liters of it. Bile is supposed to go from the liver and pancreas to the intestines. We believe that the reason that there was so much bile in my stomach was because my duodenum had weakened and was therefore not working the way that it should. My surgeon had carefully planned how to get my GI tract and nutrition strong again by surgically placing a GJ feeding tube. The tube has two routes, one that goes to straight to the stomach (G) and another that goes all the way to the jejunum (J). I have been getting meds through the G part of the tube, and then I have been getting formula feeds (my nutrition) through the J part. An added bonus is that with the G portion of the tube we are able to drain the bile from my stomach (instead of me throwing it all up). Thankfully, I was also given different meds to help strengthen my duodenum and motility to help make the bile go down instead of up. Until the medicines began working, I was still draining a TON of bile everyday. In order to go home, they had to train me how to drain my stomach - it isn't hard. All you really have to do is hook up the tube to the G part and attach it to a drainage bag, and then let it empty. It sounds much more complicated than it actually is. It definitely is not fun, and it limits my mobility some, but it is just part of my new "normal" for right now.  

Last Monday, February 18th, I got to leave the hospital and go HOME! I spent nearly four weeks in the same hospital room, with the same hospital bed, and the same view of the hospital. I had people going in and out of my room every few hours - taking vitals, drawing blood, giving me meds, etc. And while I loved my doctors and nurses, I am SO beyond happy to be out of there. 

Going back home was definitely an adjustment but we are finally starting to get the hang of things. I have to be connected to my feeding tube machine 20 hours a day, where it is continuously pumping little amounts of food into my feeding tube.  The tube feedings are VITAL because they are my only real form of nutrition right now that help keep me alive. The amount of meds that I have to take is kind of crazy. In addition to the meds, I have to get injections (shots) twice a day, everyday. The injections (along with the meds), we believe, are helping my GI tract function in the right way. We believe that they are helping move most of the bile down in the right direction. Thanks to the meds, I am currently draining under 500 mLs of bile a day, which is a big step!!! We'd like it to be down to 0 mLs, but baby steps! 

On the topic of HOME, I really missed it. I missed my dogs, my friends, my family, my bed, etc. I got home just in time for my birthday which was nice! As I've mentioned before, all I really wanted for my birthday was to be able to have a little bit of cake - sadly though, I felt so terribly sick on my actual birthday, and was not able to try to eat much. Since then though, things have looked up! I am able to drink more water, and I can try small amounts of food. I've been able to eat little bits of banana and crackers which has been really exciting! Everyday there has been a little bit of progress, and that is definitely something to be happy about. I'm nauseous pretty much all the time, which isn't fun, and I still have pain, but things are definitely going to get better. 

I had kind of a crazy day yesterday - but like good crazy. I got to go with my big brother and grandparents to the UNC game which was SO fun! I was a little scared about carrying my machine and the feed in my backpack for the first time, and it was really big deal for me to use so much of my energy. Even something as simple as walking up the stairs felt like running a marathon, but I was so happy I could go.  I missed going to the games when I was in the hospital, so yesterday truly felt like a blessing.  I have felt so much support from the entire Tar Heel Basketball family, so I knew I was in a safe place, and I was able to escape reality for a few hours.    

Last night I had some friends over to celebrate my 17th birthday! Even though the circumstances weren't ideal this year, I got to spend some time with some of my very favorite people. When you think of birthdays, you usually think of birthday cake, candles, and balloons (or at least I do haha), and my family made that happen.  I also kept thinking of the joke that Roy Williams said to me last week.  He said when thinking about my being able to eat a cupcake again, "Think of this joke, LewLew.  'Yeah, I am into fit-ness!  I can fit-ness cupcake into my mouth!'" Thinking of that made me laugh! My family brought out the cake and sang "happy birthday" and then I got to make a wish and blow out the candles. It was actually an emotional moment for everyone in the room.  I didn't get to blow out a candle for my 16th birthday because I was so sick with the onset of the entire illness. At that time, I was throwing up 60 times a day. The minute the cake was in front of me last night, I started to tear up and said, "It's been so long since I've made a wish and blown out a candle.  I guess you can imagine what my wish will be." My mom brought over a gluten free cupcake that my dad bought for me and gave me a fork. Yesterday, on Saturday, February 23rd, I was able to eat a small bite of birthday cake. This moment was so special for me because I got to share this experience with some of my favorite people. It was really emotional because for a while it felt like this would never ever be possible. And I know, it may seem weird that I am so excited about one bite, but that one bite signified a lot for me. That one bite proved that I am on the mend, that I am going to be okay. I owe all my thanks to Dr. John Petty - the man who made all of this possible. He knew me so well and took my symptoms very seriously, which led to my second surgery. Because of Dr. Petty, I was able to eat a little bite of birthday cake for my birthday, and I am forever grateful. 

Hopefully the next time I write, there will be even more progress!!! I am SO ready to get my life back to normal. 

ALSO - there is a new feature that I discovered on here! If you go to the home page or look near the title on this post, there is a button that says subscribe. All you have to do is type in your email, verify, and then you'll get an email every time I post on my blog!