Thursday, April 12, 2012

Now what? (Cuz' I have NO idea....)

So, to recap for anyone that hasn't kept up with us, in September Emily had the port placed.  In October and November she was inpatient for staph in the port for three weeks.  She was home for about a week when she got the sinus infection.  After trying all of the normal antibiotics, after having her sinuses scraped, then re-suctioned two weeks later, another 31 days on Augmentin, it's back.  We went to our pediatrician on Monday.  She ordered Zithromax, despite my protests.  Our infectious disease doctor at Shands had said that Zithromax doesn't really help sinus infections and it's a waste to try.  So, I had called them to see what else we could do.  They called in a prescription for Ceftin (Cefuroxime) for her.  She had her first dose Monday night.  She was fine that night and Tuesday.  Yesterday I was called to come pick her up from school.  Her stomach was killing her.  So, because I am a pharmacy by now, I had some Zofran to give her.  About a half hour later she vomited.  So, I ran and got the Zithromax anyway.

When I spoke to the ID docs, they had said that really if the Ceftin didn't work then we'd probably have to have a new culture.  That would mean dealing with the ENT's again, but ours doesn't really seem to understand the whole immune suppression thing.  They were under the impression that ten days of antibiotics would be enough and they wouldn't believe the infection was still there until they cultured it again.  So I'm not too thrilled about the idea of talking to them, but ID had really only gotten into this mess because they work so closely with our rheumies.  So what to do?  We have another appointment with our pedi today, but I'm not really expecting much.  Maybe if I just tell people "Ok, her Remicade  wipes out her T-cells AND her Rituxan wipes out her B-cells", maybe they'll understand better?  This is why I really need to become a doctor.  Soooo frustrating! 

In the meantime, we've been tapering her Prednisone down.  Her doctor wanted her down to 3mgs last month, but because her thighs kept hurting we didn't want to jump into it.  We just spaced it out more and tried to "trick" her body into accepting it by doing 3mgs for two days then back up to 3.25 mgs for two days.  We did that for about two weeks.  She seems to be accepting it well.  Her thighs and knees have been stiff and tired, telling me that nothing is under control yet, her ankle has been hurting and she's having back issues.  I think the back issues are from the steroid taper.  Our PT explained that since she went from no curve in her back to too much curve from the steroid belly, her back would be affected when the weight started to drop off.  Even getting better hurts with these damn diseases!!!  Then again, she also doesn't think her Remicade is working.  I hate to mention that to the doctors because we are running out of options.  I believe that our only other option would be Actemra, but knowing so many other kids that were on that and failed it, I don't really consider that a serious option. 

The bright light in all of this is that I told my husband the other night that I WILL be homeschooling them next year.  We will find a way to make it work.  She has missed 57 days of school this school year, mostly due to her infections and hospitalizations.  Because of my work schedule, she knew that she had to go to school unless she was contagious or really just couldn't make it.  She knew that she could call me out of work, but I had to at least try to go to work.  She would have missed a LOT more if I didn't have to work.  So, we're going to sacrifice.  If I can work ten hour days on Saturday and Sunday then we can make it, and they'll be home with me.  Zachary has been begging me to homeschool him for the whole year!  He's doing well, but he is definitely getting sick more often since starting Enbrel.  He's had some headaches but that's about it.

Please, let me know what the heck you would do on the doctor situation!!!  I am lost for once!  Thank you! 

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