Sunday, August 18, 2013

Where to Begin

I'm not really sure where to begin with all this. So I'm just gonna talk. On Tuesday Tyler was admitted to the hospital due to yet another central line infection. We have made lots of big changes since then. If you remember Tyler's last hospital stay he had a vascular surgery done. The surgery was for the av fistula. After we got back from the beach trip Tyler had his appointment and they were going to wait another month to try and access the fistula. Well when Tyler was admitted they really didn't have a choice about what to do. They decided to access the fistula and they got the IV in place and ready to go. They were able to run fluids, iv medications, and TPN off the fistula. So it was decided that they will pull the central line since it is infected. That was done on Friday and he was sent home on Saturday. It was really iffy whether he was able to come home. They don't have much support set up for the fistula because Tyler was the second pediatric patient in that hospital to get one for daily use but he's home and on IV antibiotics. They did a repeat echo in the hospital to check out the endocarditis whether it was still there, got smaller, or if it was bigger. We didn't get the best news. The spot on Tyler's heart got bigger. So there's still an infection. He will be on IV antibiotics for 8+ weeks until the infection is killed and the spot is gone. This hospital stay was kind of a shock and lots of changes so it's been hard. Everyone is just trying to deal with it in there own ways. I haven't been really happy lately ever since my migraines have gotten really bad. My head still hasn't stopped hurting. I finally was able to increase the dose to 50mgs and that hasn't made much of a difference either. I start school tomorrow so I really want these migraines to go away. I'm still not able to focus and concentrate enough to read a book. So school is definitely gonna be hard to handle. I'm also not tolerating feeds. At most each day I get in 32oz on average. That is only half of what I need. My rate is 160mls an hour and sometimesI have to decrease that because it gets to be too much. So I will be on my pump at school until I can get a better rate. I'm kinda nervous about how people will react to that. It really doesn't bother me about how people handle me being sick and all but right now it kind of does just because I've had so many issues at school with being sick and all. School brings back so much anxiety for me. I'm not really sure what to think. Go with the flow I guess. On Thursday we had my meeting at the high school and it went well. I don't think we will have that many problems this year which made me feel more comfortable about going. We also got my lunch changed to third lunch so I don't have to sit through lunch and I can leave at 1:15. I think that's the best thing in the world. For me watching people eat, smelling food, etc is pure torture. I want to eat so bad but I know I can't because  I will get so sick. It's just not worth it.
Lately it just feels like my entire world is crashing down on me. I have so much to deal with and sort through right now. I'm so stressed about everything and it's beginning to get to that point where it's too much to handle. No matter how much I try to make things better or help it's never works out. I had so much responsibility when Tyler was in the hospital. I had to watch my brother Brycen almost every day. I cleaned up after dinner because I was home alone with him. I cleaned the house and ended up getting yelled at for that because I didn't put something away right. I cleaned the entire house by myself and no one seemed to realize that I did it. Yet they realize something is wrong and they complain about it. I didn't bother to say it was my fault. I was probably yelled at because everyone was stressed out but I still don't like it when I really didn't do anything wrong. I can't take it anymore. I really just want a break that's all I want. I want everything to get better and I don't see why life shouldn't get better. In my opinion on I don't see things getting better to the point where I want them too. I want mito to stop attacking my brother, I want to eat real food without getting sick, and I just want everyone to be happy again and not so stressed. Every time things do look like they will get better just a little better my entire world comes crashing down on me. I'd really like a break from reality. Life sucks right now. I will be the first one to tell you that. No one can lie and tell you it doesn't because it does. I really do love my life it just gets too hard sometimes. It's overwhelming. You feel like your drowning and you can't escape. Right now I just need to breathe. I need too sort through things and grab a hold of life again. I'm not depressed at all I've just had enough. I can only handle so much. People tend to forget I'm only 15 and everything I've had to deal with in my life has been so hard most adults have never gone through what I'm going through right now. I've stayed strong only because I've had to. For the sake of everyone else you need to work out life and in the end when it comes down to it. Everything will be so good again. No one will ever understand how I feel because they aren't me. I'm the only one who can deal with how I feel right now. Earlier this week someone asked me if Tyler was dying. I was so upset. This is one thing I've really wished would never have to come up. Yes, Mitochondrial disease is a degenerative disease.  Tyler will get worse over time and most kids diagnosed before age 5 don't make it to there teenage years. Those diagnosed before age 10 more than likely won't make it to 20. We have hope that Tyler will be here until he grows old. I don't look at Tyler and think oh he's dying. No I look at my brother and I see that he is the happiest 8 year old boy on this planet. He has a family who loves him, and he gets to experience the world. He appreciates life more than anyone I ever know. It's the little things that count and I want to make sure that he has everything he's ever wanted because he deserves it more than anything else. He's been through hell and back and we aren't stoping now. So please don't ask me if Tyler's dying. If you want to be a pessimist we are all dying. Each and everyday we all get one step closer to death. You don't know whether tomorrow will be your last day, or will you grow old and live a full life. So yes technically Tyler is dying and so are you but you need to be optimistic about things. Choose to look on the bright side right now if you are reading this you're alive and that is something to be thankful for. Life every day like it's your last and I promise you that you will have the best life ever.

1 comment:

  1. Ahh hun, you're such a fighter and an amazing big sister! I hope everything works out for you both. You've given me strength through your positive outlook at such a young age. You're a star x