Sunday, April 15, 2012

Those Random Fevers

Well there's been a lot going on.  I found out the random fevers were caused by pnemonia.  We tried to treat her at home, but we could only do it for a day.  She was admitted into the hospital on Thursday.  While here, they discovered a second pneumonia.  She does well for part of the day.  She is off the IV and is getting fed pedialyte through the gtube.  We tried her normal pediasure but there were complications with that feeding last night.  She started throwing up mucus and spiked a high fever.  They thought she was getting better and that we would go home today but then last night changed their minds, and mine.  I can't take her home and take care of her.  That's a hard thing to say as a parent, that you can't care for your child.  But reality is, we haven't been able to.  That's why we have nurses throughout the evening.  It's hard seeing her so sick but it is easier than watching her have seizures.  I feel like I'm in prision.  I can't leave the room unless someone is here to watch her.  My eating schedule revolves around that.  The weekends are easier because Drew can come here and we rotating eating shifts.  All Liv has gotten to do is sit on a bed.  I'm taking another week off work to be with her, even if we do go home.  I'm missing freedom!

Monday, April 9, 2012

Weird and Sporadic Fevers

For the past 2 weeks Liv spikes fevers of 102 at completely random times.  No symptoms of being sick.  She did great all weekend long.  It was the first time in a month that she was finally back to her old self and then bam - she gets a fever this morning.  I'm taking her to the doctors today.  Hopefully they can figure out why there's no rhyme or reason to these fevers.

Epilepsy Walk

The walk was not was I was expecting.  It was great to see so many people and sponsers and good vibes, however, I was not having good vibes.  Being there made me cry.  Everyone is so happy and supportive to the ones they came with.  I only saw 2 children younger than Liv that had epilepsy.  I didn't get any connections like I had hoped.  When I talk about my daughter's complications, it makes me cry.  Maybe someday I will get past that.  Everyone was in such good moods like they don't have a complication.  I understand you need to embrace it, but it doesn't mean that it's not scary and that it's easy to live with.  So as we are walking (and Liv is sleeping), I saw a family that had shirts on that said "in loving memory" and had a picture of a girl that was about 5.  That really made the tears flow.  I mean they lost their child and are still there walking to support.  What's even weirder to me is that they were in good spirits too.  Why am I the only one so upset?  Most people had large support teams there with her and we only had the three of us.  It was sad.  I'm glad we raised about 800 dollars though.