Wednesday, December 14, 2011

Illness Update

While I told Emily Monday night that there was absolutely no way that I could stay home Tuesday, she was so miserable Tuesday morning that I caved.  Yes, I'm very worried about keeping my job, but what can I do?  She is so sick.  She functions so well, but no doubt she is still very sick.  For a girl whose temp is normally about 97F, today she was 101F in the doctor's office- and that's after being on Omnicef since Sunday.  According to my bean, it hasn't helped at all.

The weird thing is that she was fine until Saturday.  I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7.  I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th.  So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.

Our pediatrician believes that she may have multiple infections causing this.  She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT.  Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday.  Hopefully it will be read before Monday.  I already had an appointment for Gir made for that day; I just added Emily on to that one.  We have been at our pediatrician more in the past three weeks than I can remember at this point.

I'm still working on getting my FMLA leave to go through.  Apparently our doctor's didn't fax in Emily's stuff.  I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department.  I have no idea.  I really need to get that done.     Much as I would love to be a stay-home mom, it doesn't really fit in the budget.  Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick.  Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else.  Thank God our school understands with Emily.  I so love them.  <3

It's a little more delicate with Zach right now.  For one thing, anyone that doesn't know him likely worries that he is contagious when they see him.  He is truly a mess.  There is nothing that we can do except wait for the Enbrel and hope for the best.  Well, that's not 100% true.  I could slather him with Aquaphor all over, but he really, really hates that.  It's greasy, he sticks to everything and he's uncomfortable.  That's been the only thing that we find that works, and he begs us to not do it.  We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad.  We have found a few things that help for his head.  Clobex works the best, but it's a prescription and our insurance doesn't cover it.  We would have to fail everything else first, then pay $325 per bottle for it.  No thanks.  Or there's Paul Mitchell Tea Tree Special Shampoo.  It doesn't really stop the progression of the disease, but it does help remove some of the scales.  We use a nail brush, like a mechanic would use on their hands to get the grease off.

Well, anyway, back to the school issues.  I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed.  That would be easier if I could remember to get notes from the doctor's for him.  Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel.  I am currently going through an insurance nightmare with this, but I hope to get everything settled soon.  (Good thing I've been stuck home the past few days!)  I cannot wait to get his Enbrel started!!! 

Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was.  I didn't understand it at all.  Psoriasis is also an autoimmune disease.  (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son.  Psoriasis itself can really take over.  He went from having just a small patch on his ear to having his ear covered pretty quickly.  Now, years later, we marvel at how it has taken over.  It's popping up on his joints now, too.  I notice little ones trying to start all over his jaw.  It's in the folds of the knees and elbows, and the bony parts, too.  It is in his eyebrows, but it has also formed in the past on his eyelids.  He has one trying to start in the lower fold of the eye.  It itches, it burns, it doesn't feel good, and people stare.  It lowers one's self esteem.  My poor little man has been so embarrassed because of it.  Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement.  I see where it's going and it scares me.  I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved).  I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily.  Yeah, what we go through is pretty crazy, but by the grace of God we get through.  As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for.  That's enough for me.

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