Wednesday, October 26, 2011

Day 5 in the hospital

To recap, I took Emily to the ER on Friday night. They ran cultures, sent us home early Saturday morning, then called us back Saturday afternoon.

Well, this sure wasn't what we were expecting. We were transferred to the hospital that placed the port, where our Rheumy is. We had several appointments on the agenda for today, but they all went out the window. My son was to have a new patient appointment with our Rheumy, Emily was supposed to have her IV meds and an appointment with a gastro doctor. Instead they transported her via ambulance while I took our van so that I would have a way back home. We got here very early in the morning. We saw an attending doc last night who is trying to coordinate everything. Today her Rheumy came to update us. They started her on IViG to help boost her immune system. They are doing their own cultures here and debating what to do with her port. The surgeon & the gastro doc are supposed to come see her. The surgeon and infectious disease departments will confer next. They say that her type of staph is generally very responsive to antibiotics, so they may just continue the strong antibiotics and leave the port alone. Either way there is a risk. I would prefer not having to put her through two more surgeries.

And so we wait. Wait to find out the plan, wait on her immune suppressing meds that keep her pain, stiffness, and joint destruction under control. Wait to go home and back to my wonderful hubby and children. On the bright side she's actually pretty happy. She's been in a great mood, silly and all.

We would appreciate all of the prayers that we can get. She's acting so great that it's easy to forget how sick she really is.

Edited to update that the nurse just informed me that there is blood in her stool. I had told the docs that a couple of months ago, but we thought increasing her stomach med would help. Guess not. Hopefully GI will come tomorrow.

Monday, October 24, 2011

Hospital Update

While I still don't have a lot of details, this is what I know so far.  They were planning on keeping her for several more days until I explained the situation. Now that they all know and understand why we are headed to Shands on Wednesday, they are shooting to release her tomorrow.  She will be sent home with an IV and antibiotics. They will train me how to work the IV!  That's all that I know so far.  I still need to find out exactly what type of bacteria this was. I know that they finally pinpointed that.  They changed her antibiotic to Oxacillin because this strain is weak to it.  That's about the extent of my knowledge right now.

Emily's hanging in, but she was really, really hoping to go home today.  She's a bit sad that we're still here. We took a quick trip to the gift shop, but she was tired shortly after we got there.  Our big activity- filled morning went south pretty quickly.  That's ok.  I'd rather she focus on rest, anyway.   We found out that we can do laundry here at the Ronald McDonald house, and use their computers!  (Thank you!)  We can also visit the hospital library, but the latest they are open is 6:30. RMDH is only available here until 4 unless you have a room downstairs with them.  I'm so happy they are here!  I'll have to buy them a new keyboard for this computer. The space bar only works when it wants to!

So with luck we'll be home tomorrow, pack a bag and head off to Shands.  UGH!!!  Who'd have thought???

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

Wednesday, October 5, 2011

Family Camp Was Amazing!

This past weekend we went to our local "Hole- In- The- Wall- Camp".  These are the camps that Paul Newman's product lines help to support.  These camps are amazing in so many ways.  To start, they are tailored to sick children.  These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing.  They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp.   These types of camps are filled with counselors that volunteer- because they want to.  They are medical students, nurses, doctors.  They also have a disease-specific doctor on hand because you just never know what may happen.  It's a safe haven, filled with love.  To have a family weekend is amazing!  Emily had gone to this camp twice for a week each time.  She was so sad to leave it!  She looked forward to this opportunity to share it with us.

It's also a wonderful experience to get together with other people that are going through similar situations.  You really feel a strong sense of community.  They want the parents to do their own thing to recharge.  Many of us are happiest just watching our kids have fun  :)  I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc.  It was really cool watching Emily do all of the chants and the little cheers they had.  Like she totally belonged.  That was cool.  Another "Mom Moment" happened during the opening campfire.  One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people.  (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.)  For whatever reason, Emily was one of those 3 special people.  I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did.  I suppose she could have remembered her from last summer, but Em looks so different.  Any which way, it was truly amazing, and really touching.  Em also really enjoyed being in a bed right next to my bed  :)  Sleeping only 3 feet away from Mom makes her feel safe.  <3  She did have a food meltdown on the first night, but otherwise she had an amazing weekend. 

The family "Pals" are volunteers that follow the kids around.  They specialize in making the kids feel loved and happy.  They bond with the family, but especially the kids.  They have them "serve" the family, hold open doors- totally spoil the family.  We had 3 pals.  Our pal, Brittany, has Lupus.  She told us that she refused to take her Prednisone, which caused kidney failure.  She spent half of her time with us, and half in the arts and crafts area.  She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair.  Our other pals were pushing her around. I think it was a blessing having her.  She could understand better than the other two how Emily felt.  She was a camp kid, volunteering because she loved the camp and the way it made her feel.  Our pal Jake was in school working on dual masters in business & sports.  He & Zach got along very well  :)  Our last pal was Stephanie.  She was my favorite  :)  She was only 21... close to Gir's age.  She's a medical student, working her way through college in a lab that's doing research testing for Lupus.  I was so excited to hear that!!!  She was down to Earth like a good teenager, able to fit in with the kids like she was 16.  Not only did she and Gir get along well, but she & Emily did, too.  Em schooled her in rheumatology.  I think they impressed each other.  It was lovely to meet them all, and a wonderful treat getting to know them.  Many special people make up this camp!

My last bit for the evening...  Well, we're finally on the way to getting my son "figured out".   I had noticed a while ago that his hands look puffy.  While at camp, another mom said the same thing.  (Thank you again for saying it!!!  I never would have thought to jump on it otherwise.)  After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone.  So I thought, hmmm, she's here in a professional capacity, volunteering her time.  It couldn't hurt to ask her to look him over, could it?  She was totally cool about it.  She said that he's hypermobile, to start with.  And she said that, judging by his reaction, she believes he has arthritis in his finger.  She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him.  I had his blood drawn yesterday for labwork.  I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA.  (Is that wrong?)  Hopefully those will be back in the next few days.  Those should tell us if there's anything going on, though not necessarily.  I requested the lab send a copy to the rheumy.  That should help to get things started.  I really, really hope we're wrong.  I really want to be.  We shall see.  We're just taking it all one day at a time.