Monday, February 27, 2012


While I try very, very hard to remain positive 99% of the time, I am far from immune to rough weeks.  This has been one of them.  This week I find myself simply discouraged.  For once,  I look around and see more negative than positive.  I hate that.  I am trying very hard to build myself back up, but it's not been easy.

I had spoken to our ENT's office twice last week.  First because Em was more stuffy than she was after the first week on antibiotics.  Granted, she didn't have a fever, but that is pretty normal for her.  She had been draining a LOT still- more than I though was normal.  They told me to just keep using saline.  I was having a hard time expressing myself with this.  I couldn't prove that she was sick, but sure seemed to be doing about what she was when she was sick.  When they called to confirm our appointment I brought it up again.  I didn't think that she could wait until today, but she did!

Friday morning I had a very hard time getting her up.  She was struggling, teary-eyed, and not very with it.  She was coughing.  A lot.  And, just when it was time to leave, my son yells to me, "MOM!  Emily is vomiting mucus".  Woot!  She spent about ten minutes vomiting.  This is seriously just not fair to her, and it's breaking my heart.  All that she wants is to get better.  She agreed to the surgery because it is supposed to help.

Today we went back for stage II of the surgery.  By this point her eyes are all bloodshot, around her eyes is bright red, she has what looks like a popped blood vessel- all from coughing.  She sounds all junky, and she's still very sniffly.  I knew that they wouldn't declare her "fixed".  I wasn't expecting more non-answers.  (Not their fault- they want scientific evidence.)  They did a culture to make sure that there is no lingering infection.  They told me today that, while she is still congested, she's not really junked-up in the sinus cavities.  The inside of her nose is still very inflamed.  He said that usually this type on inflammation is more of a systemic reaction, often from other problems like reflux.  Well, I can rule reflux out since she's on an adult dose of Prilosec as it is. 

I had pretty much figured that I would be calling her rheumatologists shortly after our appointment, but I wasn't really expecting to tell them that this may be arthritis-related.  So, I called them to tell them about the nasal inflammation, beg them for IViG (to help boost her immune system) and also to tell them about her brand new jaw pain.  I was really, really hoping this would be the result of blocked sinuses or another infection.   The ENT checked her ears, analyzed the sinus drainage, felt her jaw, and determined that this isn't his department.  Her lymph nodes are swollen, too.    Fortunately, her rheumie's office called me back tonight.  We are staying at the hospital tomorrow night for her IViG.  She didn't technically have an appointment scheduled to see the doctor, but they are going to look at her given how much is going wrong right now.  For that I am very grateful.  I just feel so helpless right now.  One thing that people don't understand is how great the risk of infection is for these kids.  She is at a much higher risk of dying from a silly little infection that healthy people can shake off without a thought.  Another reason why we strive to gain awareness: this is much more serious than people often realize, and it can be very deadly.

So, currently I am frustrated with this stupid sinus infection that is really messing with her.  I am frustrated that I don't have a medical degree so that doctor's that don't really know me will listen to me.  And I am frustrated that I can't keep her home on days like Friday when she really needs to be home, away from kids that are germy and sent to school anyway.  It makes me feel so terrible for her!  I also feel that perhaps both of my kids would be doing better in school if I could home school them.  We are working on it.  I know that things will work out.  I just would like that to happen now, please!!!

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