Not really sure where to begin...This past week in Ohio has not been pretty. I did get to meet up with a friend who I met online! Her Mom made me an awesome shirt too!! It says Keep Calm & Fight On. Which you see below. My first day inpatient was nothing but a day of surgery prep. They have a giant TV in every single room at Nationwide!! Something we don't have here at our local hospital. They have preloaded movies, DVD player, and thousands of channels to choose from, including the NFL Network! I'm jealous about that! Mom says we need to get Dr. M to work on getting the NFL channel on the TVs in our inpatient rooms.
Day 2: Was surgery and testing day! Going to sleep was really easy and I was awake in no time! At Nationwide they don't allow parents in the PACU and I had a terrible time there! I woke up with a major migraine but they couldn't do anything about it because medications would mess up the testing. So I suffered with side effects from sedation. The testing went on all day and took roughly 8 hours. I got to eat some food(cookies, milkshake, and a cupcake). Something I haven't done in fourteen months but it made me extremely ill. I cried to be honest. It tasted so good! I do miss eating food even though I get sick whenever I even take on bite. I was thrilled when they removed the probes. I was finally able to move and get out of bed after 8 long hours. They did keep the probe in that went into my stomach so my whole wouldn't close before they could put my feeding tube in the next day.
On Day 3 I did more motility testing which only took about 10 minutes. However it had to be repeated because they lost it in their system! I was so angry but I got a second prize after that was over. You know you're jealous. Soon after we headed down to the IR to replace my feeding tube. This time I got a smaller size so now I am able to go to the GJet tube next time I need one! The GJet is smaller than the Mickey GJ and I am so excited for it! My current tube sticks out a lot and hopefully with this new one it won't be as noticeable. They didn't fully sedated me even though I was told I was being sedated. I had a little anxiety attack and no one could calm me down so they ended up having to knock me out. Which was for the better for everyone. The surgeon had some issues putting my tube in. He said my anatomy was different than most normal people and it probably would have been very painful if I was awake. Let's just say that I don't want to be awake for that again. I woke up three hours later in my room and that was the first thing I remember. Soon later Dad and Tyler arrived and then Dr. D came to go over the results from the testing and things such as treatment options.
The results we've been given are not good. He basically explained I have abnormalities throughout my entire GI tract. That we kind of already figured. The unexpected part is that my lower tract is worse than the upper part of my GI system. I had zero movement in my colon during the test and they did the stimulant twice with no effect. Still my colon didn't move. However, in my stomach it does have some function! Just does not function properly. It's primarily muscle related, but the nerves are all messed up there. If we are unable to find something to fix it with medication then he suggests a gastric pacemaker might be a decent option to fix the issue with my nerves. He said I have all three parts of the classic motility GI disorder(motility, sensation, and I forgot the other one). We did not think my lower GI system would be worse. That was very unexpected! I also have a hypersensitive GI tract. For now he gave us three medications he thinks we should try and the order to try them in. If none work he thinks we should look at an ostomy. Which I do not want at all! I do not want one after what I know Tyler went through with having only a temporary one for 3 months. Obviously, that is the last option but it is not something I want to even think about so I really do hope we can find one medication that will work and maybe I will be able to get off TPN.
At the moment, I don't know where I want to go with the results. I guess it is good we have answers but they are not the answers I want to have. It's kinda scary if you think about it. I know we have options as far as treatment goes but I know they are not good options. I do not want to be on TPN much longer and I want to get off. If nothing works then I'm kinda stuck here.
Thursday was my neurology appointment then we headed home. I don't think we got much out of that appointment. She suggested magnesium and Keppra as medication suggestions to try and knock out this headache. Otherwise she didn't really help us much. So we can see how that works I guess. Also in April I will be going to the pain clinic at Emory Children's Hospital in Atlanta to see what they can do about pain management. I can't live in chronic pain all day. I need some help with learning how to deal with it because it just sucks the life out of me.
We finally left around 11-12ish in the afternoon and headed home. I slept just about the entire way home! I am exhausted! Physically and mentally. We got home around 6:30. I unpacked, hooked up to TPN, did meds, and went straight to bed! So thankful to be home! It was above freezing last night when we got home but today it is not! I guess we just had to bring that nasty cold weather from Ohio back down to the South. Now if only it would snow! Then I think the cold weather might be worth it.
Today I am still majorly exhausted but I am up and packing because I leave again tonight for a LCY(Lutheran Church Youth) retreat in Columbia. I get to see some of my awesome friends I met from last year and of course all my other friends who are coming form my church. Hopefully this time away will be nice for me. So I can just have a break and clear my head from all the things that have been going on lately. I'm still feeling kind of crappy but hopefully my body will go easy on me this weekend so I can enjoy my break from life. I go back to school next week and I think it will be good for me.
Anyway, thank you so much for all the support from my amazing friends! The texts, comments, posts, messages, and those who just say they are praying for me. It really does mean a lot. Continue to keep us in your prayers as we follow this road wherever it may lead us. I'm adding pictures from the trip below you can look at!
