Sunday, August 24, 2008


Well, Friday afternoon I got to take another trip to the ER. This time though I wasn't sick. The lid to my tube was stuck and wouldn't come off. My mom and I tried for almost 2 hours to get it off, and no luck. So, we drove downtown to the hospital. After waiting for 30 minutes, I was seen and the Doctor was at a loss of what could have happened. It took him another 30 minutes of trying before it eventually popped open. So now when I take my feeds I either use tweezers or a pair of scissors to open it with. But, the bad thing is, that if it becomes broke during trying to open it the only way to replace it is with surgery. The type of tube I have is only fixable with surgery because a whole new tube must be put in place. Of course, just my luck. I will be going to the surgeon this week to figure out what is wrong with my tube top.

After trying to eat "real" food this weekend, it was determined that I can not tolerate it. So, back to bland food I go. Which sucks because I am having a family reunion next weekend, and Sunday dinner is being catered, and I won't be able to eat any of it.

I feel like I am getting the flu. I have started running a fever and all my muscles hurt. But, I got my flu shot, so I shouldn't be. It could be that I am just exhausted and when I get that way all my bones and muscles start hurting.

Today was my first big outing. I went to my aunt's house for lunch. I brought with me my IV pole, my pump, and all the supplies necessary for setting up for a feed. I couldn't sit up for long, and soon found my way to my aunt's bed for a rest. After we came home, I started crying. I told my mom that I hated all of this, and I hate being tethered to all pole and pump and not being able to go anywhere for a long period of time without everything.

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