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!!!

Life

but life is just life, you know? whatever happens, happens. Tyler told me this last night in the midst of a conversation we were having. It kind of shocked me when he said it. I mean I was already crying and boom. He just acts too old for his age sometimes. He knows too much because of what this disease has put him through and I hate every minute of it. The same disease that has robbed him of his childhood, hasn't let him be a kid or let him go to school. He told me he likes having someone just like him (referring to me) because sometimes he feels likes he's alone and the only one. He isn't like everyone else and as he is getting older he is realizing that. We carried on the conversation while I was doing IV medications and talked about some other things. I feel like I just have to promise my baby boy he will be okay. Everything will be okay. I know it will. Don't worry Tyler it won't be like this anymore. I know that. I love you okay? I promised him one thing last night. I promised him one day we won't be sick anymore. One day we won't be sick. We won't need lines anymore. We just won't be sick. I love you I said just holding him in my lap hugging him. I didn't even know what to say to him anymore. The last thing I say was. You are so strong, buddy. Just keep fighting. I'm always here if you want to talk about anything and I left his room. I don't know what to say anymore. So much he said last night. Just so much that I wish he could realize. Or understand so it wasn't so hard  but to be honest, I'm not even sure I understand any part of what is going on right now. He keeps my head up high on some of the worst days. We will survive all of this. The entire conversation we had last night will always be a secret kept between the two of us and it will always be one of the most special moments in my life.

but life is just life, you know? whatever happens, happens.

I'm Feeling Eh

I have been feeling really bad this week and trying to keep up with my school work is near impossible. We started daily IV fluids because last week we soon realized I don't have enough fluid in my TPN so I became dehydrated. We are now doing daily boluses of fluids and it is helping to keep my blood pressure stable as well. I'm slowly coming off of one migraine medication and slowly increasing another. IV medications around the clock still waiting to get into Nationwide. I have to go back to doing allergy shots every week because I missed several weeks from being in the hospital. That's really just the update for now because there isn't much we can do anymore. Spirit week is next week at the high school and homecoming is on Friday. I got 98% in Spanish for this 9 weeks! It's amazing because of how much I have seat time missed. In my other two classes, I have a few assignments that need to be made up so they can't input the rest of my grades into the system but hopefully, those grades will be as good as my Spanish grade!

Home

Home... <3

I've been home for a little more than a week now and it's the best thing ever. Not being able to go to school for over a month, not being able to sleep in my own bed at night, being woken up every morning bright and early just for blood draws, vital checks, etc. Adjusting to life at home with a central line is difficult at first but it's starting to get easier. The routine of things is starting to get normal. Hooking up to TPN at 4pm every day so I can be off before school starts. We've added new medications so I have to remember when to take those. Showering with a central line is miserable having to tape it up and seal it three times around just to make sure it doesn't leak. Weekly dressing changes and blood draws. Life is moving on here though it's our new normal and will adjust any way we need to. Having two kids on IV medications, TPN, and all of the other medications medical supplies isn't easy but somehow we are making it work. I see neurology tomorrow and a new doctor on Friday. Depending on how things go with neurology we may throw a GI appointment in the mix for this week. School is going great! I'm having so much fun with my friends in class. I have an insane amount of make-up work and it's so hard to get it all done but I'm trying.

There are definitely a lot of things I'm upset about right now. Until I get this central line out I can't play any sports. meaning no soccer...Soccer was the one thing that made me feel normal. I could play without worrying about anything else. Now I don't have that. I understand that I have to have the central line for nutrition but I wish it wasn't like that. I would be happy if my stomach started working again! Wouldn't that be nice? It just sucks because right now it is the only way to keep me alive and healthy.

Mitochondrial Disease Awareness Week!

Today kicks off the start of Mitochondrial Disease Awareness Week 2013. Just the perfect time to make everyone aware of the awful disease that has robbed children and adults of so much. Did you know every thirty minutes a child is born who will develop mitochondrial disease by age 10? That is 4,000 children each year in the US alone. This makes Mitochondrial Disease just as common as childhood cancer. I could sit here and tell you all these facts about mito but it would mean nothing unless you experience it first hand. You have hardly any energy to even get out of bed every morning. Some kids can't even tell their moms I love you just one time before they are taken away from their mother's arms. No energy to breathe, no energy to eat, no energy to walk, no energy to talk, and sometimes there is just no energy to do anything but lie in bed all day but do anything but sleep. It is the harsh reality for several families trying to cope with this awful disease. Tyler's body doesn't have the energy to walk community distances so most of the time he relies on a wheelchair to go from place to place. He gets his nutrition through his AV fistula since his gut shut down because it could just no longer function anymore. Probably because he just doesn't have the energy to make it work anymore. The fact that 98% of children die before age 20 who are diagnosed with this disease is just horrible. There is no known treatment or even a cure. Every night you just lay in your bed and pray for a miracle. Something that will come along to just fix everything and make it all better again. The body slowly deteriorates and all you can do is watch. There are medications to try and slow the process you take vitamins and supplements. You treat the problems as they arise. That's all you can do. Most kids die because they are even diagnosed just because of a lack of awareness. 90% of children diagnosed before age 5 don't make it to age 13. Girls have a better chance of surviving than boys do. What if this was your child? Would you want them to have those odds? We become so close to other families who have children with mitochondrial disease. You fight alongside them you lose some battles and you win some. Mito you suck! you are awful disease and everyone hates you one day you will be gone because we will find a cure. We are supporting the fighters, adoring the survivors, honoring the taken, and never, ever giving up HOPE because sometimes hope is all we have left.