Sunday, November 6, 2011

Hooray for Home!

We had a long two weeks away.  We had from Friday to late Monday night at All Children's (ACH), and then from Tuesday to the following Friday at Shands.   ACH is a beautiful, brand new facility with an amazing view of the bay.  Oddly enough, Emily was so much happier when we got to Shands.  She felt much more comfortable and at home.  I was surprised at how much her mood changed.  They are more vigilant at Shands, we get much less sleep.  But they are a great team, and we really had some amazing people helping us out there.

The short story about why is this:  Em developed a staph infection at her port.  Since Emily is immune suppressed, the doctors were very worried.  ACH wanted to remove the port; Shands opted to keep the port and just make sure to knock out the infection.  She had 2 weeks on some very, very powerful antibiotics.  I learned a lot.  For one thing, they take blood and put it in special culture bottles.  If bacteria is to grow, they generally see it in 24-48 hours.  Then they take it and see what it responds to, and they keep checking it to see what kind it is.  They test it with a spectrum of antibiotics before deciding on which one to give.  ACH saw gram positive cocci growing in about 12 hours.  Fortunately for us, Emily had only one definitely positive culture through the whole 2 weeks.  She did have one that they believe was contaminated.  Of course, before they realized that it was contaminted they told us that she had a positive culture.  I've read enough stories about enough people to know that if you suddenly develop a new strain... it's not usually a good sign.  That was one of my 2 weaker days.  Thank the Lord it wasn't accurate!  Through the 2 weeks they had her on 4 different antibiotics.  At ACH ER they gave her Rocephin.  When they called us back they told us that Rocephin wouldn't work as well on her bacteria, so they started her on Vancomycin.  After a day or 2 they decided Oxycillin would work better.  When the contaminated culture came in, they added Vanco back in for 2 days.  At the end of the two days, they took both the Vanco & the Oxycillin away and traded out for Ancef (Cefazolin).  All of them were hard on her tummy.

The other problem we had was due to her IViG treatment.  This is generally an amazing drug.  They take the antibodies from the blood products of about 2,000 people, sterilize them and combine them.  This can fool the faulty immune system into thinking that these invader cells are ok, therefore making the system work more properly.  There are not all that many side effects associated in the grand scheme of things, but it can cause some wicked headaches.  Emily's was supposed to run over 8 hours to see how well she tolerated it.  Someone read the directions on the medicine instead of following the order and set it to drip for 4 hours.  Well, apparently it can also mimic aseptic Meningitis.  I read.  No, not fiction.  I read medical stuff.  I try to stay ahead of the game.  I am fascinated with the human body and what it can do, by bacteria and things of that nature.  I had read about Meningitis in the past.  I wondered once upon a time if my son had it.  When her head hurt badly about 24 hours after the infusion, I didn't put 2+2 together.  When her stomach was feeling yucky, I didn't think much.  After she vomited and her neck started to hurt just as badly, I panicked.  Thankfully, my new level of panic is still functional.  She was miserable.  The was the worst I had ever seen her.  I never want to see it again.  She couldn't lay down, couldn't sit up, couldn't bear noise or the smell of food.  She was in her bed moaning for just over a day, maybe two.  All of the days run together and you lose track quickly.  She was just starting to feel better when her tummy starting having an even worse time with her antibiotic.  It had hurt her stomach even at ACH.  By the end of so many days, it was starting to affect her liver a bit.  Since her liver enzymes were elevating, ID (Infectious Disease) panicked, and when consulting with the Rheumy, worried that it could be her Dermatomyositis flaring.  I knew it wasn't.  She hasn't really had pain in a while.  She is actually very strong right now!  Shockingly so.  Her rheumy's agree.  So, they changed her from the Oxy to the Ancef.  She vomited many more times on the Ancef.  Zofran wasn't cutting it.  Finally we found that Benadryl was helping.  A few doses of Benadryl helped her to be able to eat.  So she was miserable there!

We were very fortunate to have some amazing friends do some amazing things!  That will be a whole new post in itself.  Let me just say that I am truly in awe of the people that I have the honor of calling friend.  I can't believe that I have these amazing people in my life.  I'm sure they don't realize how much I appreciate them, but it is likely a LOT more than they realize!  While I hate to know of anyone hanging out in the hospital for any reason, we had some of our favorite people around us the last 2 weeks.  It helped to make the week go by so much more quickly.  I also learned that as long as I have a little sleep, a morning shower & a Mountain Dew, I can get through anything.  Poor little bean probably can't say the same thing, but she sure makes me stronger.

We have to be very vigilant for a while now.  They warned me that usually they put immune suppressed patients with staph infections on a 4-6 week course of IV antibiotics.  Because hers cleared so quickly and she was at the end of a medicine cycle, they felt comfortable giving her the 2 week cycle.  We need to be on the lookout for chest pain, fever, redness, etc.  It is worrisome.  I am comforted by the fact that we will be back there next month.  And this time when we go I can have my son treated.  I have now had two doctors look at him and agree that there is a need.  Both of them have told me to just page them when we're in clinic for her meds.  There is simply too much of his body to cover with steroid creams.  They say no more than 5% should be treated topically, and we're definitely above that.  I'm so glad that my rheumy's will help him.  I feel better knowing that.  Hopefully we'll be able to bring him this time! 

There will be more to come tomorrow or the following day.  I have so much to catch up on!  One last thing for the night.....

If you're looking for some new artwork, crafty items, or just looking to support a great cause, check out The 1st Annual Autoimmune Arthritis Online Auction  November 26th-30th, 2011.  I love this new non-profit, and they are well on the way to doing some amazing things!


  1. I have a 19 year old son who was diagnosis with mixed connective tissue disease at age 5, I can relate to your issues. Thank you for the info about the causes you support Im going to do some research.

  2. Danielle you are such a strong person and Emily is one of my heroes <3 You have taught me so much already about the battle we are in for now that we have a diagnosis. Thank you.

  3. I'm so sorry to learn that there are others in the same boat. These are not very much fun to live with, and honestly, some days I don't know how she keeps going. I think it's because Emily doesn't know any other way. I don't think that I could do it, but I guess I could really get through anything if I had to.

    Please let me know if there is any way that I can help. I seem to have a knack for directing people to the right groups, or to where they can find the best info pertaining to their situation. Depending on the age of person that's been diagnosed, I have different support groups. To start with, there's this FB group:
    We've had so much other stuff going on that I haven't been nearly as active on there as I should be, but usually someone is involved on there. I deal with this by trying to help others, so again, please let me know if I can help.

  4. Jezabelle- How is your son doing now? If you don't mind my asking, what symptoms does he have? Everyone is so different! It's such a crazy disease. I hope that he's doing very well. I do know of a lady that was diagnosed at 6. She's now 27, I think, and was only taking Humira. She's been symptomless. I hope & pray for that every day, that we'll get back into a medicated remission. Do you blog? Or does your son? I'd love to keep up if you do!