More antibiotics

I've slacked a bit in posting recently, but it certainly has been an eventful 3 weeks for the Vogels.  After being off of antibiotics for a little over a week, Rylee had a follow up with her pulmonologist.  Report was sinusitis and junky upper right lung.  Before anything further developed, he felt it was best to put Rylee on a four week dose of gentamicin, though the nebulizer.  She'd do the gentamicin twice a day for two weeks, take a break for two weeks and follow up with another two week dose.  Not only was it another 10 minute nebulizer treatment twice to add to the 60 minutes she already does, but gentamicin comes with serious side effects.  While taking gentamicin through the nebulizer rather than intravenously or intramuscular lessens the side effects, there are still effects we need to be concerned about.  Hearing damage and loss is one of them.  So, at the request of her doctor, I scheduled her for a hearing test, to get a baseline and have results to compare to later.  When she asked why she was getting her hearing tested, I told her everyone does.  I couldn't bring myself to tell her that an antibiotic, which was supposed to make her better, could damage her hearing.  I didn't want her thinking that every antibiotic she takes, will have some extreme effect on her.

Friday past was our last day of our first two weeks on the gentamicin.  While I'm thankful she is off of it, I am extremely worried that her sinuses will begin to get bad again with the tree pollen so heavy.  We'll monitor the next two weeks and hope she doesn't develop anything before our next round.

It has been a tough winter for Rylee.  I kept thinking, if I can just get her through winter, we'll be fine.  These days I'm not so sure.  Since spring has sprung, she's had her first sinus infection with a junky upper right lung and 4 weeks of antibiotics.  She's been getting bloody noses just about daily.  I'm not sure if it is the saline nebulizer treatments 5 times a day, the dry air and pollen or Nasonex nasal spry--maybe a combination.  I have gotten her a saline gel to put in her nose and while it seems to have reduced the amount of times she's saying her nose hurts, it hasn't cut down on the amount of bloody noses.

Tomorrow we return back to the infectious disease specialist.  For the first time in a while, I am having pre-appointment anxiety.  Tomorrow's appointment will determine a lot for Rylee.  We will get back the results of the most recent blood work and will discuss a treatment plan, if one is necessary. Just like vest therapy, this will be a lifetime of treatment.  I'm hoping that whatever the outcome, Jeff and I both have the strength to deal with the results and help to make Rylee understand.  She asked us this weekend when we'd be done doing vest, making a 4 year old understand forever is so hard.  Giving her an explanation she understands, is so much harder.