On February 19, Isla went down for her second nap. Jordan went to get her when she woke up. He brought her downstairs and put her on the floor to walk. Her back was super arched and she had a horrible limp. We kept watching to see if it would go away, it didn't. It just kept getting worse. Jordan and I looked at each other horrified, "Is she having a stroke?" I asked. "I have no idea, but that is not good." He responded.
I called the nurse at our pediatrician's office. It was the nurse that I had talked to many times before about Isla's tests. I told her about the limping and how she wasn't limping before her nap. The nurse told me to go to the ER and maybe they will be able to move things along. We had her MRI appointment set for the 24th, but there was something very wrong happening with Isla and she seemed to be declining faster physically. So, I took her to the ER at Primary Children's.
I got to the ER at about 4pm. I walked in and they got me into a room pretty fast. They had a hospital bed, two chairs, one little table and a TV. I held Isla and tried to figure out how to entertain her. After about 45 minutes, I pulled out my pens and a notebook.
I didn't see a nurse in the room until an hour after we were put in the room. I asked the nurse if she could grab some toys for Isla, and she did. I asked how much longer would we have to wait to be seen by the doctor and she said, "Not too much longer!"
My mom ended up coming to the ER to sit with us. Isla and I waited two more hours before the doctor came. She finally walked into the room. She greeted my mom and I and then asked what was going on. I began to tell her everything, from the stiff neck to her limping. She stopped me after I had been talking for a minute or two and said, "Mom, I'm going to need you to calm down. You have too much anxiety. You need to take a few breaths."
I was confused because I felt calm. Maybe it was the fact that I had been sitting in my own thoughts for three hours? Maybe it was because I thought maybe something horrible was happening in her brain? I don't know, but I responded, "Okay, I was trying to tell you her story and everything that has hap-" The doctor interrupted, "I'm only here to help with what's in the now, I don't need to know about her history." I spoke up, "But it's all connected to why we are here today." The nurse came in and said to the doctor, "They are ready for you." The doctor stood up, "I have to go do something really quick, here how about you write everything you think I should know on the back of this paper and I'll be right back." She handed me the clipboard and left the room.
I started writing away. I wrote dates, I wrote about her labs, I kept it pretty simple. The doctor came back about 15 mins later. I handed her the clipboard. She read through everything. "Okay... So what do you want me to do about this? Why is the neck pain important?"
I looked at her in disbelief, "I think she's declining very fast physically and I just... Don't want her to die." I remember feeling very defeated in that moment. The doctor laughed. "Die? She looks completely fine to me. What do you mean die?" I didn't know how to respond. "Well, I don't know if she has meningitis or something...? We haven't tested for that." The doctor laughed again. "Oh, you mean you haven't done a lumbar puncture on this perfectly happy, little girl? Listen mom, when I see a child with meningitis, it is very apparent. I walk into the room and I'm already calling for help, they look so sick. Your daughter seems perfectly fine."
I got defensive, "Her labs are all coming back not normal. There is something happening with her." The doctor scoffed, "Not normal? What do you mean not normal? Pull up her results on your phone." I pulled up her labs on my phone. She barely looked at them, "Oh, those are fine. She's looking great. Honestly, you should be grateful you have a healthy child."
I continued to explain that the pediatrician wanted me to take her to the ER and maybe she could do something to expedite the process. The doctor responded, "Like I said before, I'm only here to help with what's happening now. Is anyone at your house sick?" I sat in silence for a moment before answering, "Yes, her dad has a cold." The doctor had gotten the answer she was looking for. "Your daughters levels are probably not normal because she is fighting a cold." I responded, "She has been fighting a cold for over a week? Because she had bloodwork done on the 11th and then bloodwork done again on the 14th and her levels got worse even after those three days."
She dismissed me and said, "Her levels aren't even bad. We can do a cotton swab of her nose to see what virus it is. That is what I can do for you now." I started crying. I couldn't stop the tears. I responded, "But she's limping. She wasn't limping before." The doctor looked at Isla, "Well then, let's see her walk." My mom put her on the ground, and Isla started limping towards me. The doctor said, "She walks great for a 16 month old. My kids didn't even walk until they were 18 months." I felt completely defeated and so stupid. My mom interjected, "But she is limping. She didn't use to walk like this before." The doctor scoffed, "She walks great for a 16 month old. Have you gone to a chiropractor?"
I couldn't stop crying, I kept trying to wipe away the tears. The doctor looked at me and out of nowhere had compassion for me, "Oh, there there it's going to be okay. What do you think we should do mom?" I couldn't believe she asked that question. "I don't know." I whispered, "We have her MRI scheduled for Monday, so I guess we will just wait for that." The doctor responded, "Oh I don't think you're going to find anything on that MRI. I wouldn't do it. I wouldn't put this girl through more than you need to. There's nothing wrong with your daughter." At that point, I just waited for her to leave. "I'll have a nurse come in and do a swab in her nose." She then asked if she could give me a hug.
After the doctor left, I told the nurse I didn't want to do a cotton swab and I just wanted to go home.
I called Jordan bawling on the way home. Maybe she did just have a cold? I asked him if we should cancel the MRI. He said he didn't know. He was incredibly angry with how they treated us, so he filed a complaint with Intermountain while he was on the phone with me. That is still pending.
Good thing we didn't cancel the MRI. That doctor missed a cancer diagnosis. More on that in the next post. Thanks for reading and being here for Isla's journey.
Love, Megan
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