It started with a little congestion. Then a day or two later a cough. Then a fever later that night and a trip to the doctor the next morning to test for the flu. Negative for flu. Viral illness was the diagnosis with treatment plan to hydrate and keep fever down. ā ā The fever broke later that night but she did not sleep at all. Was up every 30 minutes and coughing all night king. Fever stayed down at 99 for 40 hours when all of a sudden it came back with a vengeance. It was 103. I texted my husband and told him. Then started to try to get her fever down. It came down to just under 101 and she was starting to perk up. I debated for 3 hours on what to do next. It had barely been 48 hours since we were at the doctor and I know viruses take longer than that sometimes to run their course. But what kept gnawing at me was the extended break in her fever, the sleeplessness, and the slight wheezing I thought I felt when she was resting on me at 4am. My husband told me I wasn’t crazy and to take her to the doctor. My mom told me I wasn’t crazy, take her to the doctor. So I called the doctor and off we went for another visit. A few hours later after a thorough discussion, examination, and chest x-Ray we had a diagnosis of right ear infection and pneumonia in the right lung. It was VERY early. We did good and she was going to be okay because I (we) trusted our gut.
I have no doubt that if I had a different pediatrician we would not have caught the pneumonia so early. Pneumonia for anyone is serious. Pneumonia for a 2 year old is scary serious. Catching it early and starting antibiotics meant she didn’t end up in the hospital. It meant she was able to enjoy Thanksgiving. It meant her family was able to breathe easier. It meant she would be okay. Too often healthcare providers ignore the person and instead treat the symptoms by the book. If that were done here we would have again been told it’s viral and to go home, keep her hydrated, and come back in a few more days if she still didn’t improve. But because we have someone that cares for our family as if we were her family that’s not what we heard. Instead we had a pediatrician that saw Ryan in the schedule and switched things around so she could be the one to see us. We spent a great deal of time discussing possibilities and timeline of symptoms. Each little symptom. Each little change. Discussing Ryan. How she responded and changed. How she was feeling. We talked about how I was feeling. We talked about multiple options to determine what was wrong. We talked about multiple outcomes and treatment options. In the end we made the decision together, parent and provider, and because we acted as a team Ryan is better.
You know what’s scary? I almost didn’t take her back to to the doctor. I knew in my gut something wasn’t right. I knew it was more than just a virus but I also knew that it had been only a few days since onset of the illness and we had already been to the doctor once. I felt crazy for thinking I needed to take her back to the doctor. I talked to my husband and he told me to take her to the doctor. He told me I wasn’t crazy and to take her back. I talked to my mom who told me the same thing. She told me to trust myself and take her back. So I listened to my husband, my mom, and myself and took her back. I even told the doctor I felt crazy for being back but just had a feeling and knew Ryan. She listened to me and trusted me. She knew Ryan and listened to her gut.
Recently I had a conversation with someone about this very same issue. In a separate practice we saw a provider for a concern about needing to look at Ryan’s tonsils. There was zero conversation with me about what my concerns were. The provider looked at her tonsils and then proceeded to provide a very robotic, textbook response. I googled enlarged tonsils in toddler and got the exact same answer I got dell the doctor. Not helpful. I don’t need a doctor to recite google to me. I need a doctor to discuss care plan options with me, to discuss concerns, to discuss Ryan. Providers that go by the book instead of having a collaborative partnership with the patient/families to provide better and more appropriate care. Someone asked if the provider knew my story and the story of Reagan. No, they didn’t but it shouldn’t matter. I shouldn’t get different or better treatment because I lost one child already. Each parent/patient/child deserves to be treated as an individual. They deserve to be a collaborative partner to their healthcare. They deserve to be a part of the conversation and decision making. There were certainly multiple instances in Reagan’s story that I would do different if I had to do them all over again. There were providers I wish had treated Reagan and not just the symptoms. Maybe something would be different if they had. I don’t know. We will never know. I shouldn’t have to wonder. But I do and that’s a problem. We have to change the way we approach healthcare. It cannot be a textbook response and one size fits all approach. That will fail. It does fail. I know because it failed my family. That approach failed Reagan.
So to all the healthcare providers out there please take the time to listen. Partner with the patient and family members to raise the bar and provide better care. To all the mommas out there, TRUST YOURSELF. You know best and know your child. Speak up and challenge the doctors to do more and be better. Be the advocate and open the conversation. I know I will be and this has certainly been a lesson to trust myself. I am not crazy, I am a mother and I can and should trust my intuition.
Until next time…M
youaremyfightsong 