Sunday, June 6, 2010

We Made it Through Another Weekend

but just barely as usual.... Who cares though! As long as I make it home from work on Sunday night that means we are in the clear. I got up for work this morning at 5:45 and within minutes heard Riley screaming. This is usually never a good thing... Not just mad but crying and screaming. Her temp was almost 101. She has no cold symptoms. her throat is fine, and so is her urine. :( I thought for sure we would have to take her in today for a septic work-up but this is always a nightmare on the weekends! It has been made clear to me that Riley needs to be taken to Orlando(long story I won't go into) so we are basically stuck going to the Arnold Palmer ER. Anyone with a chronic child knows ER's are no place for them if you have any choice what so ever. Her fever still seemed to be autonomic today even though it was more extreme than her normal autonomic temps but it never actually "spiked". The highest it got was 101.9 when she was awake but, even with no meds, as soon as she would lay down or go to sleep it would go into the low 100's or high 99's but as soon as she starts moving around and playing again it would start going up. We know she is septic when she gets very shaky and her temp continues to go up no matter what she's doing even if given Tylenol. This is a very typical pattern for her especially since she started having low heart rates on Thursday night, that's always a big warning something's coming within a few days. She stays in this mode for so long before hand now that the docs don't want to do anything until we actually see a clear answer even though we know it's coming long before it hits. That kind of sucks for her, but we also want to minimize treating her with IV abx as much as possible because before to long these germs are going to start getting resistant to the drugs we use. Since we can't get any blood off her line to culture it I can't imagine us not being admitted tomorrow. That and the fact that the normal abx that they give for suspected sepsis is a one time a day and covers all drug, Riley
doesn't tolerate it, of course. Anytime we truly suspect a line infection or sepsis it's an automatic admission for 48hrs for 2 different abx that have to be given multiple times a day....

Basically, if we make it through the night at home I will be thrilled! If she spikes we don't have a choice we have to go right then, that's just the way it is day or night. I'm hoping we can make it until 8am when I can just show up at the pediatricians office and have her call Orlando to have her direct admitted. We already have our bags packed at least. I absolutely hate being in this situation because it's so hard to know what the right thing to do is, I wish I wasn't always the one having to make these calls. It is like tempting fate and you can only push your luck so many times before something bad happens.

Liam is still doing really good! Everything is still really swollen in there and he can't breath through his nose but he's a real trooper. He never complains but is very excited for when his nose gets all better so he can go swimming again. Especially since his ears are fixed again.

It has been a long few days but we made it through Liam's surgery and I was able to work my two days at work. Even with the impending admission, I couldn't have asked for much more. This is just how it goes around here. Always waiting for what's coming next since something is always coming. I did have several things I had needed to get done tomorrow but I guess I'll find a way somehow. I still have to go finish packing my clothes. It's just nice to pack them myself! It's always interesting when Wil has to pack my clothes for a week. You never know what you'll be wearing, LOL! Then I'm going to try and get some sleep! Say a prayer for us that everything gets handled and it's nothing to serious.... Thanks Everyone!

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