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

I Believe in Superheroes

I believe in superheroes. My brother wears his superhero cape and mask around the hospital as it shows his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill, and no cure. My brother, Tyler and I both have several rare, incurable diseases and this has brought a bond between us like no other.

I was twelve on April 16^th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon later he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles that are in his way.

Since then Tyler has cheated death twice more making our total five times. Which is way too high for an eight-year-old boy! I will admit the facts and statistics scare me because I know I will probably loose my best friend but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late.

Over the weekend Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say. I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires, and the hurt. I started to cry. It’s not fair that an eight-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is the reality of Mitochondrial Disease.

Through everything that has happened we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine the last thing he told me was “But life is just life, you know? Whatever happens, happens.” 

Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Everyday Tyler could only care about himself and how much pain he is in. Instead, he puts others first including myself. It is just something we have always done since the beginning. Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting so bad he takes the time to worry about them before he worries about himself. Tyler defines what a true hero is courageous, bold, and a fighter.

Independence

At fifteen years old most normal teenagers take care of themselves,  make meals, go to bed by themselves, shower by themselves, and manage their everyday needs however that isn't the case for me. My disease has taken away my ability to play sports, go to school every day like a "typical" teenager, to drive, to shower alone, to get dressed without help at times, to eat or drink, sometimes I am physically drained to where I can't even give myself my own medication, and to care for my daily needs. Most doctors and people don't realize that chronic illness is more than just being sick and feeling ill. It's the emotional aspect of the disease. How you manage and cope daily. Do you think you could have all of your independence taken away from you at once? How about losing your independence at fifteen and needing your mother to help you shower daily? All of this just ripped away from you at once...sometimes I think I'm handling it pretty well other times not so much. It is really hard I will tell you that. I always feel people forget I am only fifteen years old and trying to manage a "normal" life despite the conditions. You have nights where all you do is sit in your room and cry and cry and cry you don't stop, other times asking God why he chose you and just being angry at everyone because you aren't "normal" in a world that hates those who are different. I start the day the war begins another day where I have that constant reminder I can't do this or that because I am sick. At the moment I am not entirely happy with the situation I'm in. I don't think anyone would be happy if they were me either. However, this battle has only started and we have a long way to go to beat this! Maybe, my disease can stop me from doing all the things I want in my life but it can't stop me from doing the one thing I will always do. I will Never Lose Hope...and that is a guarantee.

Discharge

After a week in the hospital I will be heading home! I was admitted last Thursday for my migraines because they got worse after my surgery. We started a new treatment which failed. We have tried several other medications including pain meds and nothing has worked so for now I will be going home because they cannot do anything else for me here. The doctors have sort of run out of options and ideas on what to do next. I will be headed to Atlanta shortly to see a pain specialist, Nationwide Children's hospital to go see a neurologist there also their GI team, and an adult neurologist local will try Botox injections to see if that can help. For now that's really all our plan is because we don't know what to do. It has been an extremely emotional hospital stay that has definitely taken a toll on me. I hope being out of the hospital and trying to manage at home will help me with all this. About to go home! Good bye!!!