Transplant day 92 and the importance of education

So I don’t have much of an update for today. Patrick’s gut is needing more time to recover so feeds are advancing only very slowly. He might make it back off of TPN tonight. We’ll be here till at least Sunday. We are stir crazy and sleepy, but getting by.

But, with all this extra time, I thought I’d take a minute to write one of those blog posts I’ve been meaning to write for a while. Today’s subject: education.

I have a friend who is a high school guidance counselor for at-risk kids. We had a long conversation the other day about how easy it is to give up when life gets hard and how she sees Patrick’s story as an example. Of not giving up. Of trying to stay positive.

I told her I hoped it also could be an example of the value of education. See, one could argue that I sit around in a hospital room or at home most of the day. I am a stay-at-home mom. What good did my expensive and time-consuming college degree in Spanish and Teaching English as a Second Language do me? Couldn’t it be said that bad luck or circumstance or whatever robbed me of opportunity? I’m not climbing any career ladders. In fact, my resume probably is pretty unimpressive right now.

Except, well, that that isn’t the case at all. The very best thing I could have done for my current situation was to get an education.

Today is my mom’s birthday. And I need to give credit to my mother. She taught me by example that an educated and involved stay-at-home mom was of great benefit to her children and to society in general.

I use my education every day. Small examples: yesterday I had the cramped crowded hospital room cleaned in extra detail because I have made friends with the woman who cleans it. We speak in Spanish. I have enough friends in similar circumstances to not take her for granted. And so when I told her I was feeling cramped and cluttered yesterday, she gave me some extra time.

But it’s more than that. Here are some reasons I am grateful for my education.

1. I learned how to learn. Can I tell you how important is to be able to study out a problem by myself? Patrick needs to start a PPI medication to help prevent future ulcers. (Think Pepcid.) When the prescription went to my pharmacy, they called and said the liquid medication wasn’t formulary. (That means in the list of covered prescriptions.) They also said that starting February 1st, no medications in that drug class would be formulary because they are available over the counter.

So, I went online and and I looked up my insurance company’s drug formulary. I found a list of all of the different types of medications that my insurance would cover. I read up on how each different variation might work differently. Then I called the insurance company and explained why the medicine was needed and why nothing in the approved drug formulary would work to treat the risk of ulcers for Patrick right now. I also explained how no over-the-counter options could work for him.

It worked. My case manager took the issue to the decision makers and by the end of the day they had approved coverage for him. Even in spite of the policy change.

The hospital pharmacist paid me a visit the next day, and also paid me a high compliment. She told her students, “She is really good at knowing her prescriptions and coverage. Don’t expect that from other patients.”

The thing is, I wrote a lot of research papers over the years. I learned how to study, understand a new subject, and then put what I learned into a useful argument. (I took a persuasive writing course that has been especially useful.)

2. I can communicate with doctors on their level. I know that doctors don’t mean to talk down to patients. But I can tell you that they do talk differently to patients and caregivers who have an education. If they don’t have to spend time building a really basic understanding, you will be given more opportunities.

Would you believe that they have patients who don’t know how to use measuring spoons? Have to be taught by a nurse. Or who can’t stick to a schedule enough to give certain frequent medications at home. If it seems that we “get away with” doing a lot of treatment at home, it isn’t by coincidence. I am starting with a more solid base.

3. I use my general education all the time. I was a language and humanities girl. I did well in math and science, but didn’t like them. Guess what? I use math and science all the time. I remember sitting in the PICU after Patrick’s cardiac arrest thinking, “Boy I wish I’d paid better attention in biology.” Now I am learning and paying attention to a lot of that. Can you tell me what dose in milligrams a medication is if you’re giving 2 mL of a 15 mg/mL solution? Yup. that’s algebra. Calculating a replacement fluid dose and rate? Multiplication tables in your head. Trying to figure out how much of which foods to give? Gotta understand osmolarity. This humanities major does a lot of math.

4. I know how to use language. Every industry has its jargon. If you talk the talk, you get more respect. You get less than 5 minutes with the doctors for rounds. In that time, they will read off a lot of medical information boiled down into language that makes it quick to communicate what is going on with a patient. Then, you can either spend your time having that translated to you… or, if you speak the language, you can use it to ask your questions and make requests.

I am asked all the time what my medical background is. Guess what? Just Patrick. But I have a good background in latin and greek roots so it doesn’t take long for me to learn words about anatomy or to learn from their roots what different medications do or are made of. I learned this jargon quickly and that means I know how to use it. I never feel like they are talking over my head. And that means I can be a part of the conversation.

What’s more, I’ve had to do a lot of learning how to reword my language to help Patrick’s behavior. Communicating with a child who has cognitive delays, language delays, and behavioral problems is challenging. It takes completely relearning how to use language to get your message across. It took a lot of time having therapists work with me to learn how, but it makes a HUGE difference for all of us.

5. I can teach my son. This last is probably the biggest for me right now. The version of “Free Appropriate Public Education” being offered through homebound education right now is laughable. Earlier this week, for whatever reason, Patrick’s teacher appeared, decided Patrick was unfocused and would like to be doing something else, and he left. If I didn’t know how to teach, Patrick would be completely behind. We spend time every day working on writing and reading and counting. It not only helps pass the time, but is filling in the huge gap left by our current situation. It means I can grab the moments when he is ready to learn and teach, even if that happens at some random hour in the middle of the night.

6. I can help others. Speaking spanish. Knowing how to cook and to sew. Playing the piano. Understanding doctors and short gut. Being able to research and know how an illness is spread and protect others. Knowing how children learn. Understanding computers. Having a strong scriptural foundation for my faith. All of these skills put me in a position to not just survive myself, but to help the people around me, too. No matter where I am.

I don’t mean to sound arrogant in any of this. What I’m trying to say is this… Education is never wasted. Whatever you learn, makes your life better. I am not working in the workforce.. but I use my education every day.

“If a person gains more knowledge and intelligence in this life through his diligence and obedience … , he will have so much the advantage in the world to come” (D&C 130:19).

So if you’re thinking that right now you’ve been dealt a rotten hand and you can’t do anything to make the situation better. If you’re wondering if it is worth trying to excel in the mandatory subjects at school that you just can’t imagine a real life application for. If you’re thinking it would be better to just give up and focus on surviving right now…

It is worth getting an education. I promise. It is.

Now back to the current application of my education… trying to understand how reaching 90 days post transplant and the end of our insurance company’s umbrella transplant pricing contract is going to change how services will be billed.

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