Spending Rare Disease Day in the Emergency Room. Phoebe's fever is still going over 103.5 and she is not drinking enough to sustain her. Thankful the nurse has worked with Phoebe before and the doctor isn't " thinking horses". As a rare disease patient, it's professionals like these that make all the difference.
While we have successfully managed to avoid the other girls getting the flu or strep (our youngest was diagnosed with flu A, flu B and strep last Tuesday)...Our fear of Phoebe getting hit with one of the other viruses has happened. She woke up today with a temp of 101.8, curled into "that blanket" and went downhill very quickly. Her temp spiked up to 103.4 early this evening. We were able to use the late weekend office hours at her pediatrician to have her checked. No flu. No strep. But an unidentified virus that is crippling her with fever, fatigue and little desire to eat or drink while simultaneously consuming us with fears we know all too well...fears that are our reality with having an immunocompromised child.
Rare Disease Day is 8 days away!! Show how much you #CareAboutRareby going to globalgenes.org/careaboutrare to create your own framed image and #RoarWithPhoebe by sharing it on your social media accounts with #HugsForHope #WRDD201
Phoebe looks forward to the Father/Daughter Sweetheart Dance at her elementary school every year. She always watched her older sisters enjoy the evening by getting dolled up in a pretty party dress with their hair done just right. Last year was Phoebe's first sweetheart dance, as a kindergartner at the elementary school. It was everything she had hoped it would be and more!
With how easily her body tires out and her increasing respiratory and muscle issues, she couldn't stay for the entire dance last year. But this year....as a first grader attending with her younger sister and one older sister....she wanted to try to stay the whole night! And she did!!!
Staying did come with a price though. She pushed herself so far past what her body could handle, despite repeated reminders from her dad to take it easy and slow down, and collapsed when she got home completely exhausted. But with her feeling like a beautiful princess in her special party dress and with her perfect bouncy curls...there was no stopping Phoebe from going all out!
Winter months are proving to be incredibly hard for Phoebe. Coming down with a cold increases her respiratory issues and usually results in middle lobe atelectasis. But with the heightened flu season this winter, Phoebe is at an even higher risk. Though we do our best to keep her as safe as possible, it isn't easy and doesn't prevent her from getting respiratory infections or ending up in the ER.
I had to pick Phoebe up from school today because she was complaining of ear pain in the nurses office. By the time I got to the school I had already made a doctors appointment with the pediatrician. As I pulled into the school I had no idea that her ear pain was only one of the issues we would be facing by the end of the day and that waiting two hours to get into the pediatrician wasn't going to be an option.
In the drive from her school to our home, Phoebe's temperature had spiked from 99.4 to over 101 and she began to scream and cry in pain. With the pediatrician's office closed for lunch and her appointment a few hours away, the ER was the quickest way we could get her seen and out of pain. Unfortunately, as with a lot of the times we are seen in the hospital, the doctors and nurses were not sure how to handle Phoebe's care with her multitude of symptoms and undiagnosed status. They suspected that she had an ear infection but Phoebe's ear canals are smaller than they should be and they did have a good amount of wax in them. Which made it very difficult for them to tell. The doctor did attempt to clean Phoebe's ears out, but was hesitant to do much since she was so unfamiliar with the extensive history Phoebe has and didn't want to cause any more pain or any further issues. The ER was able to ease her pain and help bring down her temperature but insisted we follow up with her pediatrician to be extra thorough and see if there is anything they missed.
We were able to see the pediatrician later in evening, a few hours after what would have been our appointment time and they, being very familiar with Phoebe's anatomy and what to watch for, were able to diagnose the ear infection that was causing so much pain. During the physical assessment they also heard diminished lung sounds in the right lobe and discharge starting to be evident in her right eye. Their prescribed course of treatment.....antibiotics for the ear infection, eye drops for the discharge and albuterol nebulizer treatments, as preventive measures, for the diminished lung sounds.
If today shows anything about Phoebe, it's that she can wake up one way and within a short amount of time spiral downhill quickly. Symptoms are not always present all at once, often times appearing one right after another and very quickly. It's why we are so cautious with her, especially in the cold and flu season.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.