Well, for those not following the saga on Facebook, we finally got to a point of panic with Emily's sinus infection. Her surgery date was February 22, and with every day that passed by it became more and more clear that she would not make it that far ahead. The Septra that her pediatrician had called in was doing nothing but making her worse. I took her back to the pedi on Monday, panicking because I just didn't know what to do. How could she continue to go to school, how could I get to work every day, if she felt so ill? 16 days was a long wait. So I brought her to the pedi, hoping that she would prescribe Clindamycin since that had worked pretty well the first time that she used it. She didn't like that idea. Apparently, Clinda can be rough on the joints, but also it can lead to an increased risk of C. difficile (Clostridium difficile- a bacterium that can cause severe diarrhea that doesn't improve and can be contagious.) Awesome. So we left with another prescription for Augmentin, which had stopped working 2 weeks before, and a low maintenance dose of Septra, which also wasn't working. To say that I had little faith in this plan was akin to saying that a shot of Prozack could fix it. I just knew better. I have come to this point where I just KNOW things. It may make no sense, but I'm usually correct, and it usually isn't good. My intuition with medical is extremely accurate. Imagine how panicked I was. So, my brain working furiously, I'm thinking "well, maybe if I go to the Children's hospital I can get an antibiotic IV for her". I didn't want to undermine our doctor though, so I called her to see if that would be a better idea. Not liking her answer, I called our ENT. I asked them the same question, and I asked about their cancellation list. I begged them for anything that I could do to keep her going until the 22nd', explaining the situation. When you have a child on 4 immune suppressors, it tends to panic the doctor's sometimes.
About 2 hours after my conversation with the office, they asked me if I could bring her in on the 9th. HECK YEAH! I would find a way to make it work. So she had her surgery yesterday around 2 P.M. She was so excited about the prospect of surgery. You know you have a very sick child when she wants to have surgery. My brave little girl didn't utter the "I'm kinda scared" until we were on the way there. And even then, she was still happy about it. The only crimp that we had was that they didn't have a way to access her port. They had to give her an IV in her hand, which she really hates. Fortunately, she was warned and they do it under sedation, but she still cried about it. The thought of an IV in her hand was more scary than surgery, and she's had surgeries before!
Today she is resting semi-comfortably at home. She is annoyed at all of the drainage, but that's because her sinuses were much worse than what the CT scans showed. The doctor was shocked at how badly her sinues were packed, and he said that no antibiotics could have cleared that out without help. In other words, it's a damn good thing we got her in when we did. So is a little upset because she can't breathe out of her nose, she said she still feels sick, but at least we're on the right track now. The ENT said that we should have the culture results back by Monday. That will tell us which antibiotic will help her now that the crap is all out of there.
And my son is a little sick. Not like that bad, but sick. His last antibiotic didn't clear his infection completely. He has some residual drainage also, and his asthma is acting up a bit. She prescribed Augmentin for him, and I'm going to withhold his Enbrel and Methotrexate this week. I hate to do that, but I would really hate for him to go through what his sister is going through more. Take one step forward, two steps back. All in all, I think we're on the right course. At least there is a plan in place and things in motion.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, February 10, 2012
Em's surgery & a sick boy
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