Livin like LewLew

This past weekend marked two WHOLE months since my second surgery and it's kind of surreal. Two months ago I nearly died. It was one of the most terrifying things that I have EVER experienced. My body was rejecting any and all foods and I was beginning to get severely malnourished. Internally, things were in REALLY bad shape - between my entire bowel flipping on top of my duodenum and essentially crushing it and then my gallbladder's low ejection fraction (and some other stuff that you can read about in another post). It was pretty intense. Two months ago, Doctor John Petty knew me and the severity of my symptoms well enough to open me up and operate - essentially saving my life. I never in a million years would have thought that I would go through something so awful - but I am honestly so thankful for it. YES, it was the absolute worst. Not being able to eat SUCKS. But at the same time, I value everything in life so much more now. I value the little things, the things tha...

When things go wrong people tend to focus on, well, the wrong. People always asked me about how I stayed so positive through my illness - through all that I was going through. Yes, things were rough. Here I was with a feeding tube in my nose, connected to a machine 24/7. I was seeing more doctors than I had ever seen before. I was being pricked and prodded, like some science experiment. The worst part was for so much of this time, I went misdiagnosed. It wasn't easy. It took us 6 months to discover my SMAS and 3 months after that to fix it. AND then after all that, four months later, we discovered that something bad happened internally and I had to have major abdominal surgery to fix it. We discovered that if I didn't have that surgery, I may not have survived. My year was definitely not something I wished for - but in all the awful, the only thing that kept me going was the good. The fact that I was alive. The fact that I was able to speak and laugh and smile. The good is w...

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 t...

I haven't really shared a lot of details regarding how truly hard these past 14 months have been, but I guess I can start by saying that what I have gone through is something that I hope no one EVER has to experience. Sometimes it has literally felt like I went to hell and back, and then hell and back again. No part of this journey has been easy, but I've tried my best to focus on the happy in the midst of all the struggle. We've been pretty vocal about the things that I have encountered during my illness, but there are so many things that I haven't been ready to share - until now. Writing this is one of the hardest things that I might ever try and write - thinking about it makes me tear up. As you may know, I had major surgery last week. I am so incredibly thankful for my wonderful surgeon, Dr. Petty, who, by operating on me, saved my life. I am not over exaggerating one bit by saying that he is the reason that I am alive. There was no way of knowing how bad thing...

A little recap before I go into detail with what went down on January 31st - the day of my surgery. On September 6th, 2018,  I had something called the LADD procedure to get rid of my Superior Mesenteric Artery Syndrome (SMAS). It had been 286 days of not being able to eat or drink normally up to the day of surgery.  I was excited because it was laparoscopic and it was minimally invasive. The LADD procedure was successful in that my SMAS was gone! My surgeon, Dr. Petty, was able to move everything behind the Superior Mesenteric Artery, so that it was no longer able to compress my duodenum. More specifically, he cut the ligament of Treitz and was then able to move my large intestine from the right side of my body to the left side. He then moved my small intestine from the left side of my body to the right side. He also removed my appendix as a precaution. The night of surgery, I was able to drink water - something that I hadn't been able to do in nearly 9 months.  Soo...

Surgery is tomorrow and I've been thinking about it a lot. I hate playing the "What If" game, but I keep thinking about all the things that could go wrong. I am scared, but I also know that I am in the best possible hands. I have an amazing surgeon and a wonderful team of doctors looking out for me. Yes, I am nervous, but I also know that this is for the better. Recovery isn't going to be easy, but I'm prepared for that. As Hayden (my older brother) always says, "pain is only temporary." That's kind of how I am looking at it; none of this is permanent. The pain, the feeding tube, the inability to eat; all of it is temporary. It's time for me to get better. It's been a long road, and I'm so ready to get closer to the finish line.

A little life update - I am back in the hospital. The plan is to get enough nutrients so that I am strong enough to have surgery. As you can see, I have another feeding tube & honestly at this point I am so relieved. I am finally able to get some nutrients. Before, I was literally living off of water and chicken broth, both of which give you absolutely NO energy - that's why the feeding tube was so necessary. I was beginning to faint, I lost a significant amount of weight, and I was really weak. The feeding tube is helping with that. I've mentioned before how awful feeding tubes are, and yes, they SUCK. I have a four foot long tube stuck down my throat - it is most definitely as uncomfortable as it sounds. Sometimes you just gotta fight through the pain. I am also getting a TON of IV fluids, which is good because hydrate or  die -drate. Hahahaha. I don't mind getting IVs. When you've been in and out of the hospital for over a year, you learn to get used to needles...