Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Today we woke up to a screaming little boy. His ear was red from being pulled on, and he looked at me and said, “Mommy, ear hurt.”

Von rarely screams or cries. This crying was inconsolable, and the tears were streaming down his cheeks. He was pulling at his ear, and it was bright red at this point. We tried everything to help him calm down. I offered him milk, some cereal, a warm cuddle, nursing, and nothing would calm his crying. Finally we packed him up in the car and took him to the doctor. By the time we got there his ibuprofen had kicked in and he was smiling. The doctor looked at his ears and said they weren’t filled with fluid. However, due to Von’s complicated health he wrote us a script for antibiotics in the event it gets worse.

When we got home, he appeared to be acting more normal. However, a fever spiked and now we know for sure that he’s got an ear infection. He had PE tubes, and they just fell out. I know this means that he will need surgery soon to replace them, and it’s making my heart race and my anxiety go wild. When your child has adrenal insufficiency, there is no such thing as minor surgery. Minor surgery can kill a person with this disease. The pit in my stomach right now feels like dead weight. I was truly hoping 2016 would be a first year without a major test, MRI or surgery.

These are the moments I get so anxious, and I get so frustrated with the disease. I realize that for most families ear infections are just an ear infection. The child is sick, unpleasant and uncomfortable. However, the parent is most likely able to get through the day without worrying. I am feel nervous. Fevers are not a good thing with Adrenal Insufficiency. It means we have to start stress dosing him every 6 hours. He will require constant monitoring. We will have to check his blood sugar and ketones throughout the day to ensure he stays stable. His lungs and heart will have to be listened to every few hours, and we will take his temperature every two hours.

For most families this is a minor illness, for us this is a big deal. This could put Von in the hospital and I’m hoping and praying we can stay on top of it.  When a parent like me tells you that it’s never just a cold for a child with a chronic illness, I am telling you the truth. This is terrifying. It never seems to get easier for me to manage the stress of watching him fight an illness.

I’m holding vigil today and monitoring him closely. I’m praying we can stay home. Please keep us in your prayers as he fights this infection. We called in the order for the drugs. Hopefully the antibiotics will help him fight the infection.



3 thoughts on “Ear Infections SUCK

  1. Britt says:

    I have been praying for von and posted your prayers request on my instagram and Twitter. My brother has a rare disease called TSC and adrenal insufficiency, epilepsy , autism , sever vertigo that we can’t find what’s causing it. Praying for von.


    1. Thank you! Prayers your way too


      1. Britt says:

        Katie I am praying for you I don’t have a Facebook but I am reading you post just want you to know I will pray that it goes well


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