My family recently went through some of the most trying times that we have ever experienced.
Last month, we rushed Story to the pediatrician over the concern that the whites of his eyes all of a sudden were yellow. They then sent us to the ER, where he was then admitted into the hospital. Story spent over 2 weeks there with half that time spent in the ICU. (I am intentionally leaving out the details of my son’s illness because I want to allow him some privacy. I hope that you understand.)
I wasn’t prepared for the physical, emotional, spiritual and mental drain of dealing with a sick child. Prior to this, my husband and I had very little experience with hospitals, but we learned so much through trial and error that I will be sharing to better equip you to take charge, should you or your child suffer an illness.
1. Designate A Point Person
I am a big proponent of the old saying “it takes a village to raise a child”. But the stress of a hospital stay is one situation where I recommend you (kindly) ask your village take a back seat. But let me explain why.
While you’re in the hospital there will be little to no sleep, uncomfortable conditions, you will be required to listen to and comprehend complex medical terminology to then make serious decisions on the care of your child. You will have limited capacity to update each and every person in your village on what’s going on.
So, although you love them and want to keep them in the know, I recommend delegating that task to one person. Your right hand. For me, it was my husband. He was the one that I provided all the updates to and he then would cascade the information as necessary, field all the calls and answer all the questions.
This was a sanity saver and allowed me to save what little energy I had for the critical task at hand. And at the same time my village was provided with updates, so they knew how to pray for Story.
2. Come Prepared And Take Notes
The doctors need to know that you mean business, this goes especially for people of color. They will take one look at you (as they did to me) and make their assumptions about you based on what society says and unfortunately, that often leads to subpar care.
So keep a detailed record of every instruction and every directive given to you by the doctors and nurses. Challenge them and ask why they’ve prescribed a certain medication. If it doesn’t sound right, ask if there are any alternatives.
Refer back to your notes and confirm their proposed treatment plans and medications down to the milligram. Refuse to allow them to automatically place you in the script that they have in mind for you based on what you look like or where you’re from.
3. No Question Is Too Small, So Speak Up
You should have questions each and every time you have an interaction with a doctor. And in between, write down all the questions that come to your mind, be sure to ask AND get an answer for every single one of them.
Important questions that I learned that I need to be asking are, What side effects should I be aware of? and What are some signs I should be looking for that indicate an issue with the medication/procedure? You should ask these questions for every treatment and medication given because what may seem like a slight change in your child’s behavior that under normal circumstances be overlooked, may be an indication of a serious complication.
Also NEVER feel like you’re bothering the doctors, if you don’t understand something, ask again and again until you do understand. And ask multiple doctors and nurses the same question. In my experience, each one has a different piece of information to provide that helps give you a broader understanding of what you’re asking.
Remember, the doctors are working for you. You are responsible for the bill so make sure you are comfortable and understand the all services that you’re paying for.
4. Know Your Family Medical History
This was the most eye opening take away for me. My son’s illness was so sudden and rare for a child his age, so the doctors needed to gather his background information to work to find the cause.
Practically every day I was in the hospital with him, I was barraged with questions about my medical history. Questions like, Does anyone in your family have an autoimmune disease? Was there anyone in your family born premature or deemed a failure to thrive? Do you have any family members with sickle cell or lupus?
I even got the question, Is there any chance that you and your husband could be cousins? I wish this last one was a joke, but I really was asked multiple times if my husband and I were related.
Outside of knowing who in my family has diabetes. I was confronted with the fact that I have very little knowledge about my husband and my family medical histories. So I had to quickly reach out to my parents and in laws about what types of illness run in our families. These are important pieces to the puzzle to help the doctors understand not only what could be causing Story’s illness but also what causes they could rule out.
Family medical history is just another topic that we in the African diaspora don’t talk about. And that silence is literally killing us.
So I encourage all those who are able, ask your relatives what illness they have or had, document and save it. They may be hesitant at first to share but keep pressing, the answers could mean a matter of life or death.
5. Follow Up
Your stay at the hospital is just the beginning. Once you’re discharged you’re then tasked with the continued management of your child’s care including, dispensing medication, coordinating follow up appointments or even giving injections.
Make sure you keep on top of follow up appointments and your child’s progress through his treatment plan.
Continue to refer to the above numbers 1 through 4 because they will still apply even after you go home.
Have you ever had to stay in the hospital? Share your experience and what you took away from it, in the comments below.