Nightmare on Repeat

I spoken vaguely about Nori and her "incident" earlier this year. Now that we are better acquainted, you and I, I would like to tell you the whole story.

About a week after mom was diagnosed, I was sitting outside with the girls. I was a wreck lost in my fears and thoughts. Michael was out in one of the fields fishing. I knew I needed to go cook supper, but I couldn't focus. I needed some distraction from my thoughts. So, the girls and I got in my car and drove out to the pond to join their daddy. Nori was kind of whiny, but it had been a long day that was approaching supper time and bed time, so I kind of dismissed it. Neva, the country girl that she is, walked around picking up pine cones, and Nori and I sat side by side on the ground, while Michael fished. All I could do was fight the lump in my throat. I thought the world was ending. It wasn't long, maybe 10 min, when Nori started screaming hysterically. I checked her for ants, because it was kind of a pain cry. I didn't see anything. I picked her up, hollered for Neva to join us, and we loaded into the car. Nori continued to scream while in my lap. This is very out of character for her, but I blamed fatigue and hunger. She screamed all the way home, as we got out of the car, even when I sat her down in the kitchen with a cup of chocolate milk. "what is wrong?" I barked. I admit I was aggravated. All I wanted to do was process my thoughts, but the kids, the house, Michael even supper was calling my name relentless and would allow me to think. She continued to scream. I went and sat on the couch. "Ok baby, come here", I calmed myself down and understood my tired little baby needed me. Supper could wait. However, when she tried to walk to me, her legs buckled and she fell to the floor. "NORI!!! WHAT'S WRONG BABY?!?!" I was in full panic mode. It all started to come together a little. The irritability, the screaming, the out of the ordinary behavior, SOMETHING was wrong with my baby! I jerked her up and immediately began inspecting her feet and legs. I couldn't find anything. Neva was saying "mama, she's alwight, Nowi, you're alwight" over and over again trying to reassure us at her mature 2 and a half years. I jerked up the phone and called Michael. I told him something was wrong with Nori, she wasn't walking. He told me he'd be home in a minute. In the mean time, I yearned to call my mom for advice and for comfort. But she was in a fragile state. She couldn't breathe, hardly at all. She needed her oxygen tank at this point (this was post diagnosis, pre-chemo). She had been having panic attacks as well. I figured the last thing she needed was to panic over Nori, and what could possibly be a splinter. Nori continued to scream and cry. She had not stopped in half an hour. It was a cry I had never heard before. We moms can pick up on various cries. We know what all of them mean. Some are hunger or fatigue, some are mad, some are even fake, but this one, this was new. I was pacing the floors back and forth with Nori in my arms screaming away. I was pleading for Nori to tell me what was wrong, as if she could with her 2 word phrase maximum. I was waiting on Michael. I finally looked out the back window of our trailer and I could see him back there, STILL FISHING! I couldn't believe it! I will not tell you the contents of the next phone conversation, only that it was in my mommy panic mode and I DID apologize for it later. I did tell him that we needed to go to the ER. Between that phone call and Michael's arrival, things got worse, WAY worse. Nori started tightening up her entire body and flailing in my arms. It is hard to describe without demonstrating, but it was very scary. There was no question, something was wrong with her little body. There were times she flexed her muscled and tightened up so hard, I could barely hang on to her. I was crying. She was making a funny gulping sound with her throat too. It was kind of like when you swallow really hard. Except she was doing it repeatedly. At this moment, Michael made it home. "Just let me change clothes and clean up a bit" he said as walked to the bedroom. I cannot tell you my words that followed that statement either. Just that I did apologize later. I CAN tell you that I WAS not waiting on a clothing change. Her condition was deteriorating--and I didn't even know what condition it was! After he looked at Nori for a split second, he knew the severity of the situation. We all jumped in the car. I could see Ms. Becky outside, we whirled into her yard and without explanation we put a shoeless Neva out at her feet. All I could say is "Nori needs a dr." For the first time in Nori's life, she didn't have to ride in her car seat. She wasn't leaving my arms. She continued to scream and flail the entire way to the hospital. I was praying. At this point in my life, I wasn't very religious and praying was usually out of desperation. I prayed out loud the whole way there. I was crying and kissing Nori repeatedly. I couldn't stop saying "I love you baby, I love you so much! Please just be okay, I need you, please tell me what's wrong!" Michael drove silently. I looked at the speedometer once and we were going well over the speed limit. This is something I would complain about under normal circumstances, but he wasn't going fast enough, in my opinion. When we finally arrived at the ER, I walked in determined that I was not waiting the typical 4-5 hrs. They took us for an initial screening with a nurse. She asked question after question, never looking at Nori or noticing her symptoms (keep in mind, Nori is still screaming in excruciating pain at this point). She hasn't stopped or even paused in about an hour. The nurse calmly asked us to wait in a room for a nurse practitioner who would determine if Nori was ACTUALLY an emergency. After about ten minutes, I noticed Nori's feet were blue and swollen like baseballs. I stomped, Nori in tow, to the room with the nurse and demanded to see someone. "SOMETHING IS WRONG WITH MY BABY AND YOU'RE PLAYING SOLITAIRE ON YOUR COMPUTER!" I admit, I was rude. I am not one for confrontation, but you will be amazed at how your personality changes when your child is hurting. "Mam", she said sleepily, "I can't move things any faster." I looked into the waiting room. I saw sniffling children and coughing adults. "They need to assess whether Nori is an emergency??????" REALLY?" I was irate. I continued to rant until the nurse practitioner came in. I told our story ONCE again. Luckily, I didn't have to show out any more, because they took us on back.

Once we were back, we were greeted by a friendly nurse. We told our story, again. Nori was inconsolable. Watching them hold her down and stick her repeatedly was unbearable. They kept making little mistakes, maybe from inexperience, maybe because their patient was so tiny, I don't know. When the dr walked in, he concluded that it was some sort of bite. However, no one could find a bite mark on Nori's body. There wasn't one. Still, with no wound mark, he decided to treat Nori with morphine. He also wanted to keep her over night for observation. Michael and I looked at each other. Morphine? All I know about this drug is my grandmother took it in her advanced cancer stage, and they give it to fallen soldiers in war movies. They were going to give this scary drug to my little baby? Michael voiced our concern, but we were told that it was standard procedure for a snake bite. Snake bite? There is no bite mark! I had my reservations about the ER diagnosis, but I knew as soon as we made it to the pediatric floor, I could talk to another dr. Wrong. Waiting for us were two nurses. Nori was doped up, but through the meds she was still squirming and moaning. Her moan was heart wrenching. There is no worse feeling than that of a mother who cannot help her child. I wanted my mama. I wanted to ask if I was doing the right thing. Everything in me said that something was wrong, something undiscovered. But what could I do? Looking back, I wish I had done alot. But in the moment, all I did was trust the people caring for our daughter. At midnight, my mom and Ronnie walked in the hospital room (I had text Ronnie earlier). Mama was crying and angry that I had not called her. "She is my grandchild! You call me when something is wrong!" she demanded through tears. Mama was gasping for air and crying as she looked at Nori. She, too, knew something wasn't quite right.  She held Nori's little body. Her face was a little puffy. You could tell she was in pain, but the strong meds had her unable to communicate with her cry. Ronnie insisted that we take her to a different hospital. But I didn't know what to do. Around 1:00am, I called the nurses in, because Nori's face was beginning to swell worse. She was kind of asleep, but really not. The nurses assured me that she would be fine. At 3:00am, I was sure that she could not swell anymore. "How would you know if her brain swelling?" I asked out
of fear. They assured me that vital signs would be affected by this. I wasn't so sure, then again, what do I know? I asked if they could just talk to the Dr about it. They came back in and blamed the IV fluids for the swelling. "The dr. said she could have some more Morphine" they said. I told them no. I knew that I had never heard of someone looking like this because of IV fluids. Nori could not open her eyes. Her cheeks seemed to fill the inside of her mouth.  Her lips were triple their original size. Later in the morning, Michael had gone to open the donut shop. Mama showed back up a second time. When she walked in, Nori was in my lap. She started screaming and crying at the sight of her youngest granddaughter. She jerked her from my arms and continued to cry "Oh my God, Oh my God!" You have to understand, this was a terrifying sight. Then finally, the dr came in. She took two steps in the room, then her eyes found Nori. The drs arms fell limply by her side, she stopped in her tracks and her mouth fell open. Her reaction sent chills down my spine. Still does. "HOW LONG HAS SHE LOOKED LIKE THIS?" "Since around 1:30 or 2 am" I answered. It was now almost 8am. Nori was conscious, but she couldn't see anything through her swelling. She wasn't talking or drinking or eating. Just grunting in pain. The dr. examined her repeatedly. She walked in and out of the room, forgetting then remembering to ask me certain questions or details. Finally, just as Michael arrived, they informed us that an ambulance was on the way to take us to UMC in Jackson. You could tell that the Dr. had not been fully informed and was frustrated with her nursing staff. Michael and I fell into each other's arms crying in fear. "She's my little baby" he said with his head on my shoulder. I had never really seen him like this. It did two things, scared me more and made me toughen up. Though I was ACHING with fear, I reassured him "She's going to be fine. She's going to be fine". But in my heart, I wasn't so sure. What was wrong with my baby? How come NOBODY can figure it out? Am I going to lose her?

During the ambulance ride, I lay on the stretcher with Nori in my arms. I text various family members to ask for prayer. I also text Brother Robby. He had given me his number in case I needed to talk about mama. But I needed someone with a close relationship with God to help me. I needed prayer for my daughter. That ride was scary. I kept expecting her to stop breathing or start getting worse in some form or fashion. I was a wreck. It wasn't long, and we were there. Michael's sisters and Mama and Ronnie had beat us there. Next came Michael with extra clothes and supplies, then my daddy. We all waited with a knot of fear in our stomachs. It wasn't long at all before a team of Dr's came in and reassured us that THEY WOULD find the problem. There would be no pain meds, because these would mask symptoms. Only Benedryl. This sounded good and for the first time, it felt right in my heart. Nori's nurse was attentive and knowledgeable about children. They felt like it was some sort of reaction, but they didn't know what kind because there were no visible marks. Her behavior was not consistent with food allergies. With the benedryl pumping into her body, Nori started showing improvement immediately. She ate a little and even smiled once or twice. This whole situation was hard because they were constantly sticking her for various tests and it is not easy to watch your child experience pain like that. I slept in her crib with her. The next morning, Nori woke up a little puffy. She was BETTER! I called everyone and sent picture texts to those who could receive them. The dr. admitted that he was dumbfounded, but this is typical with allergic reactions. He did, however, say that there is NO WAY it was a snake bite, without any kind of mark. He sent us home with an epi-pen and instructions in case something else ever happened again. We left confident with the diagnosis we had received. We would much rather have an "I don't know, but we will treat her symptoms", than an assumed diagnosis treated incorrectly. The car ride home, I kept looking into the back seat, thanking God for his blessing. Since the incident, we have had a few more little cases, but nothing like that one. We still don't know anything! I heard about a recent case with a little boy who was misdiagnosed and it was a fatal mistake. I thought about it before, but since hearing about this poor little boy, Nori's incident has been like a nightmare set on repeat in my mind. Why didnt I demand to speak with the dr? I knew the IV had not made her look so awful, why didn't I stand up and say so? Why did I trust something that my heart was telling me was incorrect? I am furious with myself for not being stronger. I learned my lesson. It will never happen again.

When mom got sick, I thought my life was over. I thought HER life was over. Then, God showed me that we are still here. That my life is still a blessing. That I have to take each day and make the most of it. I still have moments, I think we all do. Things are tough, but I now know that it can always be worse. We should be thankful for each sunrise that our eyes can view and every hug that our bodies can feel. Life is short, unpredictable and tumultuous........but it is absolutely worth living.