Advocating for Your Family's Care

Written by Kathleen Morris

Edited by Becky Tankersley

A little over a year ago, our daughter spent three weeks in the Pediatrics unit of the hospital with a severe eczema infection.  During that three week time frame, I gave birth to my son (who also spent a week in the Pediatrics unit, in the room next to his sister).  This was not the birth or life my inner crunchy momma had in any way hoped or prepared for, but it’s where I found myself nonetheless.

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I learned a lot while in the hospital; I learned even more after we left.  I joined many online communities where thousands of patients and parents struggled with similar health issues. I noticed a recurring theme: people frozen by fear.  Not just fear of the sickness which plagued them or their children, but fear of the medical community in general—the doctors, the nurses, and the hospital itself.

Fear is a natural response, but can also be counter-productive because it can make us freeze when we should act. If you ever find yourself or someone you love in the hospital, there are a few ways to make the process a little smoother. The pointers below come from my own experience and from consulting with friends who are also well versed in these challenges. By no means is this an exhaustive list, but it’s a starting place. 

My hope is that this information will help you know how to advocate for yourself, your children, and whoever else in your life needs it.

Have a Second Set of Eyes (and Ears!)

If someone is going to be hospitalized for any length of time, I highly recommend a second person be present with the patient as much as possible.  The patient, regardless of age, has many stress factors at play, including various procedures, medicines, and lots of questions—both from doctors and nurses as well as from the patient. The second person can keep an eye on the medications, have a general understanding of the procedures and the risks, provide support to the patient, and build a report with doctors, nurses, techs, and meal deliverers.  Being hospitalized results in tons of information, questions, decisions to make, and lots of medications.  It is simply too much for one person to remember and manage alone. 

Be Grateful

Second, show some gratitude!  We have access to some of the best trained doctors and nurses in the world. Starting from a posture of gratitude goes a long way with medical professionals who are very frequently overextended.  Remember, they are human too, so treat them with respect.

Ask Questions

Third, ask questions!  If you are confused, or you are getting contradicting information, or you want to know something but have an inner voice telling you to be quiet, ignore it! Speak up! Do not let intimidation win.  In some cases there will be a team of doctors, all with different roles. Figure out who plays what role. Remember, this is your (or your loved one’s) health—your questions matter. Your thoughts matter.  Open your mouth and get the information you need.

Find the Patient Advocates

Fourth, figure out who the patient advocates are.  Many hospitals have dedicated staff to help if there are difficult encounters with hospital staff, you feel like your concerns are not being addressed, or there are upcoming procedures for which you need to prepare.  For example, our children’s hospital has a team of trained professionals who help get kids get mentally ready for procedures through play.  These individuals can also advise you on ways to reduce stress while at the hospital.  These people are an amazing resource—use them!

Know When to be (Appropriately) Angry

Fifth, and I leave this toward the end for a reason, know when it is time to channel your aggressive, demanding, no-nonsense self and direct it at the appropriate person.  For example, one weekend a tech came in to redo my daughter’s PICC line but did not tell me ahead of time.  Before I knew it, the line was out, the bed was moving (because it was on wheels and was a bedsore-preventing inflatable mattress), and the tech was trying to put a needle into my toddler’s arm.  There was no one there to hold my daughter still except me, who was a few days from giving birth.  I knew we needed at least four people to hold my daughter and put the line in based on our previous experiences, so of course the two of us couldn’t do it by ourselves. It turned into an awful wrestling match and left my daughter without a PICC line for medicine she desperately needed. My daughter was so traumatized we had to switch rooms.  Let’s just say that I informed multiple people that this “horse poo” would not happen again.

And guess what—they heard me and it did not happen again! Also, it didn’t negatively affect my relationship with the staff because I had expressed gratitude from the beginning (see my second point).

Pray

Finally, pray.  I do not think anyone can be truly prepared for this type of experience—it’s awful.  For me, crying out to God, questioning him, and just telling him where I was helped me immensely.  One of our biggest challenges was keeping my daughter’s PICC line in and clear. One weekend she lost her line (again).  If she went more than 24 hours without an IV, we would have to start the entire 14-day treatment all over, meaning a lot more time in the hospital.  We were down to a window of only a few hours, and no one could get a line, IV or otherwise, in my daughter. Even when the needle went in, my daughter went nuts and blew her vein. To top it all off, the best “sticker” in the unit, Keeley, was out that day. Everybody on duty at the time had given up.

Unbeknownst to us (and as providence would have it), Keeley’s best friend, Audrey, was my daughter’s nurse that weekend. Audrey called Keeley, who was hours away at a basketball game.  Instead of going home to rest and be with her family, Keeley came straight to the hospital from the game, yoga pants and all.  We went to the procedure room. Two sticks and the PICC line was restored, with almost no time to spare. 

You never know how God will send you a miracle. 

Today, my family is healthier than it has ever been.  We have struggled within our family and with medical professionals as I have hunted down different ways to bring healing.  If you find yourself in a similar situation, know you are not alone.  Do everything you can and rest in knowing that especially when you are at the end of yourself, God shows up in some miraculous ways.

*To learn more about Kathleen, head over to our “Contributors” page.