Minor Episode, School, Medical Costs, and My Birthday

  • Post category:Illness / School
  • Reading time:6 mins read

Minor Episode

How is your new year going so far? Ours had been good up until this weekend. I don’t know why, or if he even plans it, but James seems to have this uncanny ability to get sick on weekends. There are seven days in a week, I work Monday through Friday, so why must he always pick the two days that I have to relax to get sick? Maybe he does plan it. He knows that I am home on the weekends and can help mommy nurse him back to health, and don’t have to miss any work. Or maybe it’s simply a coincidence.

Saturday, he woke up having one of his “episodes” where he was struggling to breath, needed oxygen to keep his sats up, and had a high heart rate.

 

James lies on a pillow with a colorful polka‑dot pattern, covered by a blanket with black, white, and red designs. He has short, dark hair and a nasal oxygen tube in place. The setting appears to be indoors, with soft lighting and a calm, resting posture that suggests a quiet moment of care or recovery.
Not feeling well Saturday morning

 

By early afternoon he was feeling better. Still a bit congested, but was able to keep his sats up without oxygen.

 

James lies on a cushioned surface with a multicolored dot pattern, resting his head on a blue pillow. He has short dark hair and is wearing a dark blue shirt with white lettering. His expression is calm and relaxed, with soft indoor lighting giving the scene a quiet, resting atmosphere.
No longer needed oxygen Saturday afternoon

 

Today he was still doing good. Stacy and I joke that he likes to keep us on our toes. Maybe he just wants some extra attention. Who knows. To be honest, Stacy and I weren’t really surprised that he had a rough morning on Saturday. With the weather we’ve been having, we were kind of expecting him to come down with something. We’ve been in a bit of a deep freeze since Friday. Here’s a collage of James all bundled up for school and Friday’s temperature.

 

A split image shows James bundled tightly in winter layers on the left and a weather app screenshot on the right. James wears a white hooded sweatshirt pulled up, dark sunglasses, and a thick plaid blanket wrapped around his body, giving the impression of bracing against intense cold. The weather app for Schaumburg, Illinois shows a “Feels Like” temperature of –23°, with a high of 5°, light wind, and early‑morning sunrise and sunset times. The pairing emphasizes just how bitter the cold is.
Bundle up James, it’s cold out there!

 

It’s supposed to get a bit warmer tomorrow and then drop back down for the remainder of the week. He does have a snow day tomorrow, but we may be keeping him home the entire week. We haven’t decided yet. We’ll have to see if the weather changes.

 

School

In other school news, they had one of their Spirit Weeks a couple of weeks ago. Stacy loves these themed days. We love that James’ one-on-one nurse dresses up for them as well. They make a cute “couple” don’t they?

Spirit Week Day 1: Pajama Day

In a classroom setting, James sits in his wheelchair wearing colorful pajamas decorated with comic‑style words like “POW” and “BOOM.” His nurse kneels beside him, also in pajamas with a light pattern, gently holding his hand. Bookshelves, cabinets, and classroom supplies fill the background, creating a cozy school environment. The moment feels friendly and supportive, highlighting connection and care between James and his nurse.
Pajama Day

 

Spirit Week Day 2: Orange Day

In a classroom decorated with winter crafts, James sits in his wheelchair wearing a bright orange shirt with a skull‑and‑glasses graphic that reads “CHILLAX DUDE.” His nurse kneels beside him, dressed in an orange headband, orange jacket, and light pants, smiling toward the camera. Behind them are wooden cabinets covered with snowman and polar bear artwork, shelves with bins, and a small table with chairs, creating a cheerful, colorful school environment.
Orange Day

 

Spirit Week Day 3: Camping Day

In a classroom, James sits in his wheelchair with red and black padding, holding a children’s book titled “Good Night Lake.” Beside him, his nurse kneels on the floor wearing a tan hat and a green plaid shirt, smiling toward the camera. They are both dressed in matching green plaid shirts. Behind them is a large whiteboard with a calendar grid and colorful classroom decorations, including posters, borders, and learning materials, creating a bright and welcoming school environment.
Camping Day

 

Spirit Week Day 4: Neon Day

In a classroom decorated with winter crafts, James sits in his wheelchair wearing a bright green shirt and blue jeans. His nurse kneels beside him in a bright pink shirt and gray pants, smiling toward the camera. Behind them, wooden cabinets are covered with paper polar bears and snowmen, and shelves hold neatly labeled bins. A hanging sign reads “Badge City,” adding to the cheerful, organized classroom atmosphere.
Neon Day

 

Spirit Week Day 5: Athleticwear Day

In a classroom, James sits in his wheelchair wearing a red athletic jacket and black pants, with supportive footrests. Beside him, his nurse kneels on the floor in a black‑and‑gray sports jacket and black pants, holding a light blue water bottle and smiling toward the camera. Behind them, wooden cabinets are decorated with snowman crafts, colorful bins line the shelves, and another student sits at a desk working, creating a busy, inclusive classroom atmosphere.
Athleticwear Day

 

Medical Costs

I think we all know that healthcare and medical costs in this country are out of hand. I just shake my head whenever I look at my paystub to see how much is taken out for health insurance. I am glad we have it, though. I don’t know what we would do if we didn’t. Whenever I do our taxes and get to the part where I have to figure out how much we’ve spent out of pocket on medical stuff, I log into our account on our insurance company’s website and look to see how much has been billed to insurance. It obviously varies from year to year based on the amount of time James spends in the hospital. Some years it’s in the hundreds of thousands of dollars. It’s insane!

Earlier this month we got a glimpse of what it would be like if we didn’t have insurance. For the past nine years, palliative care has been picking up the tab for James’ medications. When James was in the hospital in November, there was some sort of rift between the hospital and palliative care. Palliative care ended up dropping James for the four days that he was in the hospital. He was supposed to get reinstated once he was out of the hospital, but they realized that they were doing more for us than they should have been doing and cut our services way down.

One of those services was paying for James’ prescriptions. Stacy went to fill one of James’ seizure medications towards the beginning of January and was, well, shocked is an understatement when she saw how much it was going to cost. I’ve been trying to shy away from mentioning the names of prescription medications on this blog, but I am going to make an exception here.

 

A screenshot shows prescription information for a medication labeled “Onfi 10mg Tablets.” The quantity listed is 105 tablets, and the price with insurance is shown as $2,148.72.

 

Over $2,000 for medication?! With insurance? Granted, it was the beginning of the year and we had not met our insurance deductible yet, but come on! $2,000 for a month supply of medication? I don’t know how much (if any) the insurance company paid towards this prescription, but this drug company is making at least $24,000 a year off James? I can’t even imagine how much they must be making off every patient taking this drug.

Stacy and I discussed our options. James needs the medication so not getting it wasn’t one of those options. We do have a little bit of money in savings, and we do have James’ medical fund so we could pay for it out of pocket. Then the question became how long would we have to pay for it out of pocket before insurance kicked in. Is there another med that will need to be refilled soon that might cost more than this one?

Fortunately, James has secondary insurance through the University of Illinois Chicago Division of Specialized Care for Children who ended up paying for the medication. But damn! Talk about being stressed out!

But wait, there’s more! In addition to palliative care cutting back on services they give us, our insurance company only supplies us with four syringes a month. Well, if your son takes eight different medications, the math doesn’t really add up, does it? Stacy found a company online and purchased a large quantity of different sized syringes at pretty good pricing. It was a veterinary supply company believe it or not.

 

Several boxes and packages of medical syringes sit on a countertop. A large white box labeled “EXEL Disposable Syringes 50ml” is on the left, and a smaller brown box labeled “Oral Dispensing Syringe 5ml” is beside it. In front of the boxes are two plastic‑wrapped bundles containing individually packaged syringes. Behind them are everyday household items, including snack packages, a digital kitchen scale, and a bottle of hand sanitizer, creating a mix of medical supplies and kitchen clutter.
Syringes that Stacy bought from a veterinary supply company

 

If you’re ever in need of syringes, check them out: https://www.calvetsupply.com/buy-syringes-and-needles.html

 

Birthday Gifts

You would think that I would eventually learn to start writing these blog posts earlier in the day. It’s after midnight and I have to work in the morning. James may have a snow day, but daddy doesn’t. I just have one more thing to share and then I can try to get a little bit of sleep. My birthday was earlier this month and James made me a card and got me a little picture frame ruler. Thanks dude!

 

A handmade red birthday card sits above a wooden photo frame. The card features a child’s drawing of a car colored in green, orange, and black, with “Happy Birthday Dad!” written across the top in black marker and three blue heart cutouts attached. Below it, a ruler‑shaped wooden frame marked with inch measurements holds four small photos of James in different settings, including one with two other people and festive decorations. The combination of artwork and photos gives the scene a personal, heartfelt feel.
Birthday gifts from James

 

Alright. Now I can go to bed. Have a good one and thank you for letting me share James’ story.