I Listened to God and Didn't Yell at a Doctor

I formulated a plan without even realizing it.

It all started a few months ago. My daughter, Jaycee, and I ventured off to Mayo Clinic for a third (and final) opinion of her respiratory issues. We were blessed to get answers we were seeking for years. Her multiple pneumonias and respiratory infections that have required hospital admissions every few months were explained. The episodes of her suddenly turning blue and needing emergency intervention now had a reason. I was relieved to get answers, and I was grateful for the doctors who provided such stellar expertise.

What was I to do about her regular pulmonologist who had been treating Jaycee for years? My daughter was a complex case; there's no denying that. Many eyes had looked at her, and none had come to the conclusions that Mayo Clinic did. In some respects, I see how things were missed. Still, Jaycee's regular pulmonologist didn't always seem on top of her case.

"It wasn't that bad," the pulmonologist commented once after three long weeks in the ICU on a ventilator. I'll never forget that statement as it showed the doctor was disconnected to our reality. It was bad, and I'm not sure why the doctor didn't see it. We depended on this doctor for guidance and help, and I often felt I needed to explain why such help was needed.

Other times, the doctor was properly concerned with the frequency of illnesses. Tests were ran (sometimes the same ones) a few different times over the years. Nothing significant was found to explain her problems. Medications were tried with little to no effect. When a second opinion elsewhere provided little change in Jaycee's health, the good doctor told us, "Jaycee is just going to get sick."

I have reasons for being frustrated with this doctor, as you can tell. Armed with a CT scan, multiple test reports, and pictures from scopes that displayed several "new" problems identified at Mayo Clinic, I contemplated my next move with Jaycee's pulmonologist.

I daydreamed about entering the office with my pile of medical reports and a smug face. I fantasized about telling the doctor about things that were missed, important tests that were never ran, and diagnoses that were never caught. I pictured myself asking the doctor why certain things were never considered. I imagined a heated discussion where I yelled about past issues concerning improper medical care and how Jaycee suffered through multiple hospital admissions as a result.

Of course, this was all in my imagination. I rarely yell at anyone in real life (though maybe my husband would have a different opinion 😊), so the odds of this actually happening were slim. Yet, I found my frustrations growing with the pulmonologist the more I pondered everything.

As my mind supplied me with varying scenarios with the good doctor, I got a nudge from God. Early one morning before my thoughts went haywire, God reminded me of an important aspect of Jesus in the Bible. Jesus was ridiculed before his death. People questioned his authority and divinity. They mocked him, and spoke blasphemously. His treatment was unquestionably horrendous.

When Jesus arose, he didn't come back to show the unbelievers who he was. He came back for his disciples. Jesus revealed himself to the people who loved him. He didn't go to Jewish people at the synagogue, the high priest, or Pilate for an "I told you so" moment. Against our human reasoning, Jesus didn't visit his accusers to show them their error. Jesus supported those who already believed.

Obviously, I am in no way trying to compare our situation to that of Jesus. However, I do believe there's wisdom we can glean from his actions. When God brought this story back to my mind, I knew what I had to do.

I didn't need to go throw our new knowledge in the doctor's face. It wasn't necessary for me to have an eruption of every pent up frustration from years' past. The doctor and Jaycee weren't obliged to have some sort of closure. God was telling me to let it go. I can't change the past anyway. It was imperative that I get help for my daughter, and it simply wouldn't be from that doctor anymore.

I took my daughter's new information to her primary doctor, cardiologist, and other important members of her team that have been supportive. Consents were signed for communication between everyone, so they can understand the new treatment Jaycee would be receiving. I canceled my future appointment with the old pulmonologist. For the time being, the doctor at Mayo Clinic is taking over Jaycee's pulmonary care.

The thing is, I didn't pray about any of this. My thoughts gave me a plan, but my relationship with God provided a way for me to revise it. I know I did the right thing. Tomorrow, I hope I do the same.

Preparing your Child with Special Needs for Medical Procedures

In a few weeks, my daughter will be having a series of tests completed at a hospital. The thought of those procedures gives me anxiety and stress. I know how difficult some of these things will be for Jaycee. I dread them, but they are necessary. One way to manage all that negativity is preparation.

Besides packing for the hospital, I will be trying to help Jaycee understand what will be happening. She has a long history with hospitals, which is sometimes a hindrance and other times a help. Jaycee has an Intellectual Disability and is minimally verbal, so visual aides, repetition, and simple explanations are all important.

Over the years, I have figured out how to best prepare her beforehand and how to best support her during the event. Here are some tools I use:

Videos/Pictures
I love YouTube. Every time I have went to YouTube searching for a video for Jaycee, I have found it. Jaycee connects to videos well, so they are the best way for me to explain procedures we don't do often like CT scans.

The key to using videos as a tool is watch them with your child, narrate what is happening in them, and watch them more than once. Videos are good because they help Jaycee anticipate what will happen and help teach her new vocabulary.

Whenever I can, I try to take a picture of Jaycee in a procedure to use later as a reference. For example, I have pictures of Jaycee during her sleep studies because I know she will have to have it again. I then use that picture to remind her of what will occur the next time she has one. I have similar pictures of her during a CT scan. I can't take pictures of every procedure because it isn't proper or I'm focused on her care, but they are helpful to have as a reminder for her.

Picture Sequence Cards

I have made a few picture sequence cards like this one to help Jaycee with familiar situations that cause her angst. Blood work and IVs are horrible experiences for everyone involved. As soon as Jaycee sees a tourniquet, she starts to panic and reacts defensively. Before she starts to get upset, I try to pull out this sequence card in order to show her what will happen. I have other sequence cards for suctioning and diaper changes, which are things she only deals with while hospitalized. I keep these cards in my purse, so I have them when she needs them. 

Pain Cards

I made these cards for Jaycee, because there was a time when she panicked over every procedure. X-rays, for example, are pain free, but Jaycee couldn't be convinced otherwise for a time. She fought everything due to her anxiety of the unknown, and it was exhausting for both of us. I used these pain cards in different situations so that she could begin to understand that not everything in the hospital is painful. After a few years, Jaycee responded better, and I only pull these cards out now in extreme circumstances.

Doll Demonstrations

Occasionally, we have used dolls to help Jaycee understand what is going to happen. We purchased a hospital gown for her American Girl doll, and I created a hospital wristband for her doll. We have changed her doll into these items prior to Jaycee's planned hospital admissions. Jaycee understands the connection. Jaycee is often reluctant to wear a hospital gown because it means she won't be going home immediately. Therefore, we try to convince her to put one on to be like her doll.

Sometimes, hospital staff have used teddy bears to demonstrate wearing oxygen or IV insertions. This technique has not been helpful for Jaycee, especially when they attempt them on her own dolls. Jaycee has gotten upset during these demonstrations. I do believe part of her reactions are because she understands what they are telling her and isn't happy about it.


These are the ways I have helped Jaycee prepare for hospital procedures. With medical testing coming up, I will be going over some of these things again. Let's pray they work, and things go smoothly!