waiting.

Waiting has never been my favorite thing to do.  Patience is something I've learned; but I've never learned to love it. 

Before bed last night Abby's temperature jumped up to 104.  That's always scary, but what was really scary was her hands and feet turned to ice.  Her body and head were burning up, but her limbs were cold and dusky.  I called my aunt, who is a nurse and asked her what to do.  I really wanted to take Abby back to the hospital, but I think I knew she could stay home.  She said to try Motrin and if it didn't work to take her back.  Motrin brought it down to 102, but more importantly her limbs warmed back up. 

She stayed between 101 and 102 all night.  She's still looks awful and skinny.  She's lost weight, although we're trying to run her feedings at least some today. 

The initial blood culture report was negative, so she'll stay home for now.  All we can do is wait for her to get better or get worse.  We are still thinking that this is a virus.  It's just a nasty, mean virus.  Our biggest concern is that we're missing something.  I guess time will tell.  If it's a virus, she should begin to look a little better today.  I don't expect her fever to spike again because it's been 72 hours now and most virus's start to burn out after 3 days.  If she continues to run the high fevers we'll make a decision then. 

Jeff left today and one of my caregivers is out sick with a bad tooth.  Hopefully everything will settle down, since I'm down helpers.  I'll miss my goofy husband making me laugh because every time I tell him Abby's temperature, he comes up with a radio station somewhere in the country that correlates to the number.  Right now Abby's temp is 101.7 (he's gone, so I'm not sure where that would be).  She hasn't had any Motrin yet , so maybe she's on the way to getting better. 

Today I'll wait.  Yuck.:(  Wait for answers, wait for better, wait for our own messed up normal.  I don't like it, but I'm waiting. 

Scary

Sweet Abby Grace has not had a good day.  Her fever won't stay down.  She looks worse than I've ever seen her look.  She simply has no color.  She's so pale that when she falls asleep, Jeff and I have to make sure she's still breathing. 

Her color is freaking me out!

We are home with her for now.  Her blood work didn't look bad which is so weird.  Her blood work is off every week when she usually looks okay.  Now, most things look normal, but she looks awful.  Her fever breaks for a bit, but goes right back up.  Her O2 sats are good, which is good.  Her heart rate was up pretty high, but that's not too abnormal considering her temperature.  She hasn't tolerated feedings for the last 24 hours. They gave her extra IV fluids in the ER.  

They let us bring her home and for the first time in my life, I was scared to take her.  I cried leaving the hospital.  I know they're right.  They weren't going to do anything for her there that we aren't doing here.  Control the fever and run IV fluids.  Her Dr. didn't want to start antibiotics until he sees the blood cultures.  He's not convinced it was a contaminant two weeks ago.  Because this started 10 days after she stopped antibiotics before, it's possible that we just stopped something brewing and didn't actually kill it.  We are just not sure.  If she has a blood infection, I can't imagine her white count being normal.  If she has a virus, it's awful. 

Jeff has decided to stay an extra day because Abby looks so scary to us.  It's awful being so afraid for her.  It was one thing to not want to be in the hospital and deal with that.  It's another thing entirely to be so worried about her.  We just wonder how much her little body can take.  

I'm praying tomorrow comes with answers and Abby does well through the night.


***Fever's up to 103.9, giving motrin and really praying she's alright tonight***

And again....

Stubborn fever.  Poor Abby. 

I would probably take her to the hospital to get checked out now even if she didn't have all the other issues she has.  Her fever went up and down through the night.  Down a little with medicines and then right back up again. 

She woke up 102.2. 

I didn't sleep much, but I feel more peaceful about taking her in.  She needs to go and get checked out. 

Hopefully we'll get to come back home today, but I'm not naive enough to think that would really happen (darn it).  I kind of miss the days when I believed that she could get sick like other kids do. 

So now we'll see what another day brings.  This is still the day the Lord has made and I will do everything I can to rejoice and be glad in it.

Desperate

That's how I feel.  Sad, weighed down, desperate for good news. 

People ask me about Abby all the time and with each response I long to say "she's great"!  I would even take "she's recovering".  The truth is, I just don't know how she is. 

She has a fever again.  102.9.  I called the Dr. and told him that I didn't want to bring her in again for powerful antibiotics that she doesn't need, especially because of her white blood cell count last time and the reaction to the Vancomycin.  The danger, of course, is the possibility that she really needs powerful antibiotics and she's home with us. 

It's been exactly two weeks since we were in this exact same place.  The Dr. said we could try to bring the fever down at home and bring her in if she gets worse.  It's been 8 hours and it hasn't dropped to less than 101.9.  We'll see how tonight goes.  I would not be at all surprised if tomorrow greets me with a trip to the hospital.  Our bags are packed and waiting by the front door, a drill we have sadly become accustomed to. 

She looks so bad.  She's pale and feverish.  I just want it to stop.  I want to stop worrying about her. 

Jeff has been here since Wednesday and we have all relaxed a little.  It's the longest time we've had together in our own home for more than a year.  It's been so nice, but always lurking is the feeling that we're stealing time. 

He leaves tomorrow and I will have to handle all of this. 

There are really no words to express how desperately I do not want to do this again.  I am so tired of the hospital.  More than actually being there is the constant threat of being there.  Everyday she stays home is a day we've worked hard to keep her here, and God in His mercy has allowed it.  I haven't started a single day in almost a year that hasn't included some sort of mental planning for the possibility of Emily or Abby being in the hospital. 

I'm just praying tonight.  Praying God would show me whatever it is He's trying to teach me in this trial.  Praying for wisdom to know when to take her to the hospital and when to stay home; praying for this desperate dread I feel to somehow ease a bit.