Sunday, October 23, 2011

October is hospital month for us...

While the little miss is busy painting, I have taken over her internet!

So, she still doesn't really have a good grasp on when it's important to speak up when it comes to her body.  She's gotten much, much better, mind you.  However, now she's gone to the opposite extreme of telling us about a tiny pain that is there and gone in the blink of an eye, but she doesn't really express when that little pain turns into something bigger.  We knew that her chest was a little uncomfortable from her port placement, but we didn't realize that there was more to it until Wednesday.  Apparently, she didn't feel like telling her daddy on Tuesday.  She told me on Wednesday, so I called the surgeon and her pedi.  We made an appointment for Thursday since her pedi is only open for 3 hours on Wednesday's.

Our pedi appointment went well.  The nurse at the surgeon's office had told me that they would likely want to access and flush the port, take labs and xrays.  Our pedi said that she wanted to be really aggressive.  She prescribed Augmentin as an antibiotic and a strong antibiotic cream.  She also requested that we take a cup of water and two tablespoons of bleach (yes- Clorox!) to wash the area with to kill the bacteria.  So we did.

The next day her chest hurt still, but it was in a different area.  She waited until I got home from work to tell me this, after a full day of school.  (GRRRRR!)  So, knowing that this would mean a trip to the ER, I called her pedi.  We agreed that it would, indeed, be the right decision to take her to the ER.  I had planned on using the one by my work because they did have a pediatric floor, but our doc suggested we make the drive to an actual children's hospital.  So off we went.

We spent the majority of Friday evening in the ER.  They sent us home around 5:30 A.M. after taking cultures, finding out that her blood work was normal, and after a round of IV antibiotics.  We got home and crashed hard!  The night had been long and frustrating.  The worst of it was when they had to access the port for the first time.  We were prepared for her to have a hard time emotionally, but since the area around the port was infected, it was harder.

At home she slept in until 3 P.M.!!!  Obviously, she was quite tired and worn out from the night in the ER.  After she woke up my phone rang.  It was the hospital calling to say that they found "Gram Positive Cocci" growing in her culture.  After a quick Google search I found that it's a class of bacteria that includes staph and strep.  Not very surprising.  It also turned out that the antibiotic they had given her in the ER was more for meningitis and not meant for staph or strep, so they wanted us to come back to the ER.

Once we got here we realized that no one really knew what to do with us!  Someone had dropped the ball and forgotten to write notes.  We were told downstairs that they weren't 100% sure we were staying.  I knew.  You can call it crazy, psychic, coincidence or whatever else you like, but I know things, and I knew that we would be staying.  Just like I knew that we would be the ones to develop a crisis like this.  That's how we roll.

We talked to the doctor for a few minutes before he decided to keep her.  Naturally, part of his reasoning is because of her being immune suppressed.  In a child with no other issues they would probably have sent them packing, but that could be a mistake with dire consequences in an immune suppressed child.  So, they got us a room upstairs.  Because nothing is ever normal for us, they told us the wrong room number.  The transport lady, a worker from Child Life, Emily & I all went to the right room on the wrong floor.  It even said "Hi, Emily!" on her TV screen.  There was no bed in the room and no name on the door.  They finally found out where we were supposed to go!  Up to the 8th floor, in a room with an amazing view of the city and the bay!

So far, we're pretty much just chillin'.  The worst part of her stay so far has been accessing the port for the second time (still with an infection lingering) and drawing blood out of her arm.  She was so, so upset about that, but their reasoning was very logical.  They needed to gather more blood for more cultures from the port to see if it was a fluke, but they also needed to get a peripheral to see if the bacteria had spread to the rest of her body.  Makes sense, right?

The cultures take 24-48 hours to come back, but apparently on a weekend there isn't really much of an interest when it's not a huge rush.  That's fine.  Aside from missing Daddy & her siblings, it truly hasn't been a bad stay.  Hey, there's TV, movies, internet, room service, a great view, and quiet (yeah- in the hospital!)  We've been told not to expect the quiet to last until tomorrow.  For now it's been nice.  They say that tomorrow there will be a ton of residents all wandering around the floor, med students, and other staff.

So we pretty much just have to wait for the cultures to come back and stay on antibiotics.  (Just her, not me!)  They said that once they find out what type of bacteria had grown on the first culture they'll have a better idea of exactly which antibiotic to use.  Hopefully after finding that out we'll be able to go home!  I know that this is the best place for her to be. She knows that, too.  She told me this morning that this must be a good idea because her pain went from being between a 6-7 to a 1 on the scale from 1-10.  Thank God this time she's used to hospital life.  Last October when we stayed at Shands, it was truly hell.  Neither of us could wait to go home, we were so far away from home, and she was so scared.  At least this time she is familiar with the routine, and the port makes her even more brave than we already know she is.

Oh!  And one last note:  The Child Life worker that escorted us up here is awesome!  She came back to help them access her port yesterday, then back again to draw the peripherals.  She promised to visit today, and she did!  Not only did she come visit, but she left Em to nap and came back with a Taylor Swift Barbie doll!  She also brought some Halloween stuff for her to paint, so she's had a busy night.  Everyone here has been fantastic (minus one phlebotomist), but this lady has just been amazing.  Hopefully tomorrow there will be more to do.  Nothing is open on the weekends, but tomorrow the gift shop & library will be open.  I can't wait to get her out a little bit!  Hopefully we'll be back out tomorrow.  We have an early appointment at Shands on Wednesday for her meds, a GI appointment for her in the afternoon and a new patient appointment for my son with our rheumy.  Wish us luck!  And prayers would be wonderful for a quick recovery and all of the bacteria to be GONE.  Thank you all!  With love from ACH <3

1 comment:

  1. I am saying prayers and always thinking about you and your family. Give my love to Em. Will we see you guys Saturday at the connect day?