So this is why it's called "Hell Week"

The doctors don't call it that, but all the parents I've talked to have basically said that the week following surgery is hell.  I was actually able to talk a lot with another mom who's daughter just had the same surgery this summer.  She gave me so much great information, and especially what to expect over the whole 6 weeks.  That info was invaluable!  However, every child's experience through this will vary, so her set backs will probably be different from ours.  She warned me and prepped me for the tough stuff in the first week, but man - this is harder then I expected.

Last night was really really tough.  It's like with each day, there's a new issue to solve.  Yesterday after fixing the problem with the stent, the doctors told us that because all that backed up pee got flushed through, it's like swirling around bad bacteria with good.  They said that because of this, they will put her on new anti-biotics, but it's very likely she'll spike a high fever over night.  So I geared up, and the nurses knew to monitor her.  At about 11:30 she was sleeping and starting to get a little warm, but I knew she was due for her tylenol at midnight, so I dosed off.  At 11:50, the nurses were by her side packing ice packs around her body and trying to cool her down.  She was at 104 degrees and climbing.  I stood there completely helpless, and telling them to get that tylenol now.  They can't go faster than their orders.  It was ordered for midnight, so we had to cool her down and wait 10 minutes.  They got the tylenol flowing through her IV and we kept cooling her off.  She was miserable.  The fever finally went down after awhile, and more so over the next few hours.  By 2 am, I was just sitting by her bed stroking her hair or massaging her feet.  They kept asking me to go lay down, but I couldn't fall asleep.  I was up most of the night just watching and helping her get comfy.  The nurses were set to take her vitals every 2 hours, so any time I would finally dose off, they were back in the room.  Before I knew it, it was morning.  Docs stopped by to see how she was doing and check everything.  Benny came back to take over and I went back to take the longest shower probably ever in history.

Today, there been a little progress.  Good thing is that the fever has not come back.  The anti-biotics are working.  They took the epidural out so that she can move around a little and are giving her a pain pump to hit if she feels pain.  Which she has in the incision part, so we have pushed it quite a lot today.  Especially when we have to move her a little.  She's happy to be able to mover her legs more and not be numb.  She's also still getting Tylenol and Valium around the clock.  Her breathing is getting better too.

There's been other issues with little things today too, but they were able to fix most of them.  The next big hurdle is getting her stomach to wake up and tolerate some drinks.  They are so slow introduce them back into her system for fear of throwing up, constipation, or distending her incision.  I thought it would be today, but I'm hoping tomorrow now.  We are finishing up day 4 post-op and she hasn't had anything but ice chips, it's the worst.  It's so amazing and heart breaking what these kids go though.

Today was definitely brightened when I asked all my friends on Facebook to send some videos to cheer Lily up.  Almost immediately my phone was filled with videos from friends, and also people I don't even know that well, with kids singing songs or sending a cute message.  Me and Benny both cried as we all watched them together and saw Lily smiling and waving to her friends.  We are continually grateful for the support coming from back home.  We are feeling it, and still need it.  So thank you!   Really hoping that tonight goes a little smoother, and she gets some uninterrupted sleep.  Pray for stomach movement so she can start drinking tomorrow!