So, Jamie has had three MRI's now. The last one showed that the infection is largely cleared up on the right side but, now, out of the blue, without any symptoms whatsoever, it has appeared on the left side. It's in the mastoid and the Petrous. She was so good for her MRI, staying completely still for 45 minutes in that banging laundry machine, in the hopes that a clear picture would mean the end of her treatments. But, despite her efforts, and enduring three needle pokes in her left arm (they cant get blood back from her PICC so there were two pokes for her IV for the contrast, then, they decided later to take blood, as well...poke three) the treatments continue. We are in, what, week 9 or 10 now of IV antibiotics twice daily over 3 hours each time. Plus an oral antibiotic, as well.
When we were in the hospital it was, obviously, all horrible and hard but we figured we caught it early and "4-6 weeks" of antibiotics would Fix This. We also thought her eyes would just "go back to normal" all on their own one day soon. Set-back after set-back from that idea is hard.
We've also learned that, no, her IV tubing cannot be changed every 4 days, but it needs to be changed Daily! We had a different nurse to the house one day (to change Jamie's bandaging) and she was horrified. She actually said, "I mean, she's just a little girl". Ugh. Can we, please, take proper, good care, of my daughter? Please? So, no, the nurses don't want to come everyday to change her tubing so, in addition to running all her treatments, I'm now in charge of changing the IV line daily. I could go ~on and on~ here at this point, but I'm really trying to stay positive so...yah...I just think the level of *care* and *cleanliness* should remain consistent no matter which nurse comes to the house. Seriously. Frack.
Oh Gawd. And her MRI. That contrast is radioactive, you know. Why doesn't she get IV fluids to help flush/protect her kidneys?! They don't even tell you to give her extra water to drink. Nothing. Are we giving better care to our dogs than our kids?! Ugh.
This. Is. Stressful.
Two more weeks, then another MRI.
I guess I'll be calling in advance this time to see why she isn't getting fluids. Advocating, advocating, advocating.
(undercover photo taken by Jamie while her Dad and I speak with one of her Doctors)
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 of...is 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.
It's hard to believe it has been almost a year since I've worked on "The Mommy Project".
This past year has been really busy. Really too busy. In addition to my 3 days a week job, I also started a photography business...and photography blog...and volunteered with our not-so-local animal rescue. I also helped my hubby with his business...and attended another landscaping seminar. I also started running and trained for my first 5K. I also continued to be a mom to a three year old little girl who is still at home with me (when I am)..and her two bigger sisters. Of course, there were still all the pets (two dogs, two rabbits, and one ratty-girl) to take care of. And a husband to remember. And friends to keep in touch with. And a house to keep livable. When you have that many things on your plate...it gets hard to fit them all in and prioritizing can get difficult...especially when that new business you started requires more hours than there are in a day just to market it.
Well, let me tell you this: there is nothing like your little girl almost dying to remind you of what exactly is important in life.
I think this year will see a lot of changes (again), but this time it's going to be all about lightening my load and remembering to cherish every single minute I have with my family. They have always been my priority, but I've been working so hard to be able to, one day, spend more time with them, that I've been way too busy to enjoy them like I should have this whole past year. Ironic.
I won't be wasting any more days. Each one is far too precious.
I'm a mom to 3 great little girls, a wife, a runner, a veterinary technician (animal nurse), and a photographer. I love my iPhone. I'm a horrible blogger. I think Pink Newtons are the best thing since sliced bread. I am sensitive to gluten. I have really big teeth. I miss coffee.