Monday, April 9, 2012


So I find myself back at The Mommy Project now, not just to document my beautiful kids and the amazing thing it is to be their Mom, but to vent the boiling kettle that is my insides right now. I had been updating all the "goings on" on my Facebook page, but my hubby wasn't comfortable with all his friends, family, and people he hardly even knew knowing what was happening before he could tell them. I really can't fault him there. So, I stopped posting on Facebook. And I started just keeping it all inside. But, for me, that is hard. I need to get it out. Even if it is in a practically anonymous blog post that no one may ever read.

To make a long story short, my little sparkle, my funny one, my mini-me, my Poodle, my JJ, has Petrous Apicitis. Don't bother Googling that: her Infectious Disease doctor warned me not to, and for once, I listened. Our last few weeks have been so scary and life has taken place walking on eggshells. I just don't need anymore frightening information in my head. Basically, it is a severe bacterial infection in the bones of her skull, secondary to a virus. She had the flu, got better, then got sick again. She didn't have any severe symptoms...just a bit lethargic and complaining of a headache. We just thought she had come down with another bout of the flu that was going through her school like gangbusters and with some advil she was completely fine. But, when the headache moved from the top of her head to above her ear, I thought it might be an ear infection and we took her to see her doctor. Ear meds were prescribed and by the next day she felt, "Great!". Problem was, now her eyes were going crossed. We rushed her to the emergency room immediately and ended up with a CT scan, a MRI, myringotomy surgery, four teams of doctors looking after her, a prescription for 6 weeks of IV antibiotics twice daily, surgery to place a PICC in her left arm, and the diagnosis of Petrous Apicitis (an advanced version of Mastoiditis).

We are home now just waiting until her second MRI to tell us if the antibiotics are working or if she is going to need surgery. That has had its own challenges as she became allergic to her antibiotics after a few days at home (she has a history of allergies to antibiotics, so her becoming allergic to this one was pretty scary: she NEEDS these meds., and she needs them to work). That lead to 7 more hours in emerg. one day, and another 5 hours the next...after hours and hours of doctors appointments before that. Her doctors put her on something different (and off label for kids) and she had an immediate reaction to that, as well. We now have to give her Benadryl an hour before every dose of IV antibiotics and the infusion takes three hours to give, twice daily (we are giving it extremely slowly to avoid a reaction). Home care nurses aren't able to stay with her that long, so I've become her nurse, giving her all her IV treatments.

Then the problems with her PICC began, with me not able to draw back any blood from the line. That lead to a chest X-ray, an order to stop her treatments (her Vital treatments) and a Linogram (a "moving" X-ray taken while a contrast medium is injected into her line). She has had so many x-rays, but the worry of what affect that will have on her little body has to be set aside for the other more immediate worries she beating this? Will she need surgery? Are her eyes going to go back to normal?

Is my baby going to be okay?

There are lots and lots of worries and stresses in life, but I've got to say, "Will my baby be okay?" is the absolute worst one I've ever had to experience.

- Posted using BlogPress from my iPad


Shan said...

Oh my gosh. I feel so bad for all of you. Hugs my friend. If you need anything... holler.


Jamie and your family are in my thoughts and prayers. Hope today's MRI results were good!