Tubieversary

Today marks one year with a surgical feeding tube in place and things sure have changed since then! When I first got my tube it was because I had failed way too many food trials when we reintroduced foods. I was having terrible sinus issues with the NG-tube so it was time for it to be removed. I was nervous getting the tube placed but I am so very happy I did! It has made things ten times better for me! I was no longer the sick girl who hardly had any energy and forced herself to eat food even though it caused terrible pain. I was thriving, healthy, and able to manage a normal life!! Right after my tube was placed I had done several news interviews for Feeding Tube Awareness Week in 2013! My tube gave me the life I didn't ever have. I didn't have to worry about eating food that made me sick. I wasn't in pain anymore. I could play soccer with my tube even! I've had my ups and downs. That G-tube has been changed to a GJ-tube. I have had two central lines and been on TPN since September. I was wanting to get my g-tube placed and hopefully get it out in a year or two. However, at the moment that doesn't look like it will be happening anytime soon. I am glad my family made the choices we did and I have been able to enjoy my life! I'll add some pictures below of my past year as a "tubie"

Kiawah Island June 2013

 January 2014

 March 2013

 Removing my NG-tube!

 I'm a Super Tubie

 Nationwide Motility Testing

 Last Day as a Tubie!

The Good, The Bad, and The Ugly

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!

Motility Testing

You know what sucks? Motility testing. Let me tell you it is not pretty nor is it a fun test to go through. The procedure itself went well the probes were placed but I again woke up with a major migraine even though this time we did not use propofol. The eight hour test went under way about an hour after I was moved from recovery. My nurse was wonderful in the motility suite! I really did like her. We do not have any results from the test yet. Meeting with the doctor tomorrow to go over those. I did get to eat food today!!! Yes you heard me real FOOD! I regret it now because of how bad the pain is but you know. I had a cookie, a cupcake, and a few sips of a milkshake(I didn't like it much). I cried because I got to eat you honestly don't know how good it is to take a cookie after not eating one for 14 months. I haven't even had any real food since like July? MY nurses even sang Happy Birthday to me! I got my cake finally 7 months late! lol You know how good that feels? Well until you start feeling so sick before you even finish a cookie! Finally after eight long hours they took the colonic manometry out but I am stuck with the one that goes into the hole where my feeding tube is until I can get it replaced to my GJtube in the IR tomorrow morning. I will be having more motilty testing in the AM. After the test I have been feeling so so sick. We are draining my g portion of the catheter where my feeding tube should be but it's not helping. I was told I would get pain meds are the test but they lied and have now refused. So I am super lucky to be me! NOT!! I have gotten IV Zofran, Tylenol, and Benadryl which hasn't helped. I've had an allergic reaction to the food I ate earlier and a rash appeared all over my body. Thank God  I will be discharged tomorrow(Wednesday)! I am ready to get out of here! So sick of this place. I have not had a good experience today. Seeing neurology on Thursday then headed home. I hope the doctors have some answers for us and are able to help me at least. Since everything has seemed to go downhill today. I am still wide awake and in a ton of pain at 12:15am even several hours after my nightly dose of ambian. Pray we can manage my pain tonight and I will be able to get some sleep. For now since I'm wide awake I'll be watching "The Perks of Being a Wallflower" Anybody seen it before? Is it good? This is my first time watching it!
No Fear. Just Faith.
Romans 8:18.

Can't wait to be home!!!!

This Journey

Tomorrow we leave for Nationwide Children's Hospital. Our 9 hour trek to Ohio will start bright and early. I have so many mixed emotions going on through my head, I'm happy, excited, scared, sad, and angry. While there I will see the Neurology and Gastroenterology team at Nationwide. I'll be having surgery specifically the same motility testing that Tyler had done which caused a gastric perforation. Although I am terrified that may happen to me I'm also even more terrified about what might happen if we never find answers. This testing could give us some answers to maybe help me. Or maybe even help Tyler. Like what if they could find something that helps me and then give it to Tyler and it helps him? All the doctors are talking about how we have the same "genes" it's gotta work somehow? Too many emotions to even think. I haven't entirely processed it all. I mean I know we are going but I don't know what to think about it, what to expect, or how I feel about everything. It's just a lot going on. Sunday after we get there I will be meeting up with one of my amazing friends Kaitlyn! At least we will be able to have some fun along with it! I do have some boring school work though too. BOO!! I am still awake now just thinking. Just thinking about what comes next or what is going to happen tomorrow. I am ready to start this new chapter and am very hopeful that these new doctors may be able to "fix me." I think that would be a lovely thing. More importantly I am ready to have my life back. Maybe I will get back into soccer, be able to shower on my own, go to school like a normal kid, or care for myself. How amazing would that be. I'll be updating at the Ronald Mcdonald House once we get there! Have a good weekend everyone! Please keep us in your prayers this week! Pray for safe travels, my siblings, all the doctors and nurses who will take care of me, but also pray for my parents because I know they need their worries to be set aside right now too. <3