When I came out of surgery, they had a hard time warming my body temperature up due to the autonomic dysfunction. Even though the doctors tried everything in their powers to make me as comfortable as possible through the operation and tried their hardest not to stir up the autonomic dysfunction, it still happened. So they ended up having to wrap me up in blankets. However, since I am unable to really be touched either because of the extreme pain, they also had to keep giving me lots of pain medication such as Dilaudid to try to help control the astronomical amount of pain that I was soaring through my body. So that my intestines don’t receive all the attention, my esophagus also is causing problems. During the exploratory surgery today, they also took a glance at my esophagus and they also ran some tests as well on it. It turns out that my esophagus isn’t functioning, as it should. We kind of knew that already, but now we have the hardcore evidence to prove it. The doctors wanted to do this test yesterday, but they couldn’t insert the probes. I wouldn’t hold still and therefore, they decided that they would insert the probes when I was under anesthesia for the exploratory surgery. So I woke up with the painful thing coming out of my nose. It turns out that my esophagus is not functioning, as it should be. Therefore, I am having difficulty swallowing anything, which includes water. In fact, anything besides water is basically impossible to go down. There is basically no peristalsis, which is the mechanism that the esophagus does to get the food/drinks down in the lower esophagus. In fact, there are even times where my esophagus does the reverse and it brings it back upward instead of continuing it towards my stomach. Just as the colon is dilated, so is the esophagus. The esophagus is very lax and lost its peristalsis, and that is why I am having difficulty swallowing. I can barely have any liquids and even when the doctors gave me baby food, it showed that I couldn’t tolerate it. So, the doctors are really having their hands full on what to do with me because I am literally a huge mess. This is the reason why things don’t go down and also why I am aspirating. The doctors said that they could do surgery to “tighten” things up in the esophagus, but it would mean that it would be even more difficult to eat, which would not be in my best interest at this time. Therefore, the doctors decided that since there is so much wrong with me at the current moment, we are just going to focus on one thing at a time so that we don’t “rock the boat” too much at one time. We don’t want to stir up things too much that things get too out of control that it ends up being a disaster. So in the meantime, the doctors are just going to hope that it doesn’t worsen and we are going to ‘watch’ the esophagus to make sure things don’t worsen. The doctors told me that when I eat that I have to basically stand up because I need gravity to work on me in order to bring the food down since the esophagus isn’t working to produce peristalsis, which is the body’s way of bringing food down. In addition, I cannot eat or drink a lot because the sphincters are loose and the muscles are not strong enough to keep things down. I can only have slushies and liquids in the minimal amount. Since it is so important for me to eat and drink because of how much I weigh and also because they don’t want me to be dehydrated, they said I should be sipping and taking very small bites of food all throughout the day. In fact, they said that I can’t tolerate any large meals whatsoever and whatever I eat basically just sits in my esophagus. One shrimp is enough to fill up my entire esophagus because it can’t pass down. That is why when I did have that one shrimp, the doctors were able to remove it, as it was not digested or anything. My dad and I also spoke to the doctor about getting the “bag,” which I am totally fearful of. I will have to get special belts so I won’t have to worry about my bag getting in the way of my life. In addition, the belts protect the colostomy bag, securely holding it up and against your body so there is no fear your pouch might get pulled off from your stoma appliance or snagged if it hangs down. The only problem is of course that they do of course cost money, which is something that we don’t have at the moment and an added expense to the pot. All I ever hear is “money, money, money!” I wonder what this world would be like if money didn’t exist. Why does everything have to cost money and revolve around it? I am a total mess. I so tired of fighting and I am so tired of hearing bad news. Sometimes I wonder if it isn’t better just to give up already. But then I remember all the stuff that I overcame already and how much I really want to become that doctor, so I keep pushing on. I am not going to lie… this is definitely not easy. In fact, it is getting harder and harder each day. But knowing that I have the support of others I have to say really makes a HUGE difference. Thank goodness that I have my dad with me by my side to hold my hand. I couldn’t have asked for anyone better than my dad. Not only is he my dad, but also he is my very best friend. He always makes the sun some out on those gloomy days. In fact, he held my hand throughout the entire procedure with the esophagus and was with me at my bedside before and after I went into the OR. After the long day of surgery, we got to spend the night watching a movie in the hotel room. It was so nice to just be able to watch a movie with him. We watched the new movie that just came out called EDGE OF TOMORROW. It was pretty good, but I expected it to be better than it was. Well… tomorrow morning is one more test, which is a 5-hour test and then it is home for me for a bit. We are taking the red-eye home tomorrow night and I really can’t wait to get home. Of course we will only be home for a little while because we will have to return shortly to California for another exploratory surgery and pre-surgical testing. Then it will be time for the massive surgery to take place, which will be when they actually remove the entire colon. Its going to be one long trip home tomorrow because the nights are usually the worst times for me because that is when the pain is the absolute worst. However, hopefully it won’t be so bad and hopefully with the usage of medication and everything, the trip home won’t be so unbearable. Well… that is about all that is right now. One more day in California. I really do love it here. If I could pick any place to live, it definitely would be here. Thanks again for all your continued support. I can’t tell you enough how much it means to me. I definitely wouldn’t be here today without the support and encouragement of others. Please continue to pray and spread the word of my website so that I can receive the appropriate treatment that I need in order to live. Best, Fallon
Posted on: Thu, 19 Jun 2014 10:23:28 +0000
Trending Topics
Recently Viewed Topics
© 2015