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.

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

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.

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

Spirit Week Day 2: Orange Day

Spirit Week Day 3: Camping Day

Spirit Week Day 4: Neon Day

Spirit Week Day 5: 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.

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.

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!

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