Mellodi's Fight with Pneumococcal Meningitis
Mellodi May March was born at 8:07 am on May 8th, 2020. She was in every way perfect; she may have been slightly spoiled but perfect still. She was my late-night baby, my hold me or I'll cry baby, my attached to mommy baby. I mean to be honest; her siblings were ideal babies to say the least. They slept through the night, they ate good (maybe puked a little extra) but easy-going babies. Mellie, well she cried for a few people the whole time they watched her, she was just a mommy's girl kind of baby. The only exception to me was daddy or nana. If she could see me, she would let someone else hold her, for a short time anyway. We'll start with the basics; she went to all her well baby checks. She was vaccinated, well she was one set of shots behind because at her 3-month
appointment she got the scheduled shots. Well, she did terrible!! My poor girl was so miserable, none of the other kids were like that, it didn't seem normal. She wasn't scheduled to see the doctor again until her next well baby check at 6 months. So instead of going the following month for just the vaccinations, we just decided to wait until we seen her pediatrician. Her appointment was scheduled for Nov 11th, 2020. She got a cold in the weeks before and a minor one truly. Sniffles, slightly congested but truly minor. Well Saturday Nov 7th, 2020, I got home from work and my mom (nana) told me Mellie had been sick and didn't feel good. I checked her temp and all that she had a low-grade fever 99.8. She was teething or I suspected by all the drool she was teething so I gave her an over the counter fever reducer and within half an hour she was back to my happy baby. She ate a jar of bananas and she cuddled me, we had a visit with her daddy, and she drank her bottle and went to bed as any other normal day. Now our normal morning routine, she would wake me up and I would give her a bottle before I got ready to leave for work. I woke up and it was later than normal, and she hadn't woken up at all. I went to her bed and that little girl was burning up. I took her temperature, and it was almost 103, so I called into my job and Mellie and I went to the closest ER. (I gave her an over the counter medication to reduce the fever again.)
When we arrived at the Emergency room, her temperature was 105.5. They gave her another dose of an over the counter pain reliever, then they tested her for RSV, Strep throat, and the flu. They also did a chest x-ray on her. All her tests came back negative, the doctor had had been in for 2 seconds to tell me what tests they were running, and he listened to her heart. When the nurse came to tell me, she was negative for the things they tested for, she brought me discharge paperwork. I vocalized that I was not happy with this, we didn't know what was wrong. The response i got was well its virus and we can't do anything for that. I went on to say How I was not happy and basically, the response was well that's what the doctor says so that's it. I took my princess home, we had alarms set and weren't two minutes late for a dose of either over the counter pain/fever reducers.
Mellodi hadn't had a bottle since the night before when she had her night time bottle before bed. I cuddled and snuggled and loved her during the day, then I called the nurse on call from her family doctor. She was so lethargic, and she acted like it hurt to hold her little head up. I mean she wouldn't. Her cry was different too, when I say this I may sound like some crazy mom, but her cry was different it was the saddest, she was in pain sort of cry. So about 3pm I asked my dad if he would take us to another local emergency room, I figured new doctors and new nurses. She was so sick, I held her in the car on the way there, she didn't even sit in her car seat. By this point, Mellie was crying if you moved her even. The Nurse back in the ER, well it was obvious, she was annoyed. she had decided I had a spoiled little baby; she took her from me to take her temperature and my baby SCREAMED!!! I told them she hadn't drank a bottle since the night before (coming up on 24 hours) She had one wet diaper. And I was very concerned! well she brought me a bottle of Pedialyte and told me to try and force Mellodi to drink it. She wanted no part of that. The nurse then told me; you're going to have to force her to drink something. Okay so who has kids? force a 6-month-old to do anything? I think not. Well then, they did a COVID test and a chest x-ray. They couldn't believe that the other ER hadn't done a COVID test. Okay well it was decided that she was severely dehydrated, she drank about a half ounce of Pedialyte while we were waiting for the test results to come back, o not much at all. When the doctor came into see Mellodi and talk to me, he told me she was negative for the coronavirus, but she was positive for the rhinovirus, which in a healthy adult is the common cold. It can make infants very sick because their immune systems haven't encountered it. He told me she was very dehydrated, and I needed to push fluids, because of COVID it wasn't necessarily safe for her to be admitted. I was supposed to go home and get her to drink Pedialyte somehow and do not miss a dose of medication for her fever.
My little girl was so sick, my dad and his wife kept my older to kids because she was so sick. For the entire night I got up and gave her medicine droppers 5ml or so of Pedialyte every half hour, just trying to get fluids into her little body. I was supposed to go to work the next morning, when my stepmom came to get me, I told her I had called off because something wasn't right. Mellie slept on me all night. I never put her down, she stayed laying on my chest while i went to the restroom even. In the early morning, 7:30am or so I called her pediatrician and scheduled an appointment. It was at 11. When I was done making the appointment I laid back down (Mellie on my chest still) and I went back to sleep for a little bit. I woke up at about 9:45am and I had a friend of mine sit with Mellie I laid her on my bed. When I returned, which was not 10 minutes even she was okay I moved her and she cried a little bit. I was sitting next to her and she started to breath weird, I almost thought she was grunting trying to poop. I realized it was her breathing and I Called my stepmother and told her we weren't waiting for the doctor's appointment at 11, I wanted to take her to the emergency room right now. When I picked up Mellodi to put her in her car seat, everything was wrong. she was limp and unresponsive. Her eyes were all the way to the left. I instantly yelled for my mom to call 911. My stepmother and my middle daughter got to my house and when Gracie walked inside, I walked out holding Mellodi, I didn't want Gracie to see her that way. I didn't want her to be scared. It was the longest wait ever waiting for the ambulance to get there, it felt like an eternity standing there begging Mellie to be okay.
When the EMS finally arrived, they immediately started bag breathing for Mellodi. They let me ride in the EMS with her, while they tried to start an IV anywhere on my unresponsive little girl, they asked me questions. Questions, even right in the moment I resented. Trauma? NOO, I did not hurt my baby. Now, my dad and stepmom had followed to the ER, my mom was getting my other daughter onto the school bus. Because of COVID, I had to be alone in there with Mellodi. They struggled to say the least with the intubation. I am from a very small area; doctors don't have a large amount of experience with infants or if they do, they life flight them on to a hospital that can help. Mellie, however, couldn't wait for the trip to the closest children's hospital, which by life flight is about 30 minutes, away. I watched them try and try to get that tube into her lungs for a long time. They couldn't get an IV or one big enough, so they drilled a hole into her shin bone and ran one there. I probably should have never sat in that room and watched all this; it was a new sort of helpless feeling. I begged and prayed that Mellodi would be okay, it wasn't the last time I begged god to let me keep her throughout this.
When I called 911 that day, never could I have imagined this would be the outcome. We spent 3 treacherous weeks in the PICU with her, holding on to hope. She had a massive stroke Nov 9th, the day she was life flighted. Acquired Brain injuries are strange as in as they heal it seemed she got worse. How it works with brain damage, the tissue that is damaged shrinks back and dies as it heals. Then there is no function as to when its damaged its function is not proper but there is function. Mellie had seizures, massive amounts of them. They had her so sedated with the medication to control them that it became hard to even tell how well she could breathe on her own. The prognosis was already terrible really. At this point, we had moved from one Children's Hospital to another Children's Hospital in Columbus. They were very high up on the list of Children’s Neurology. A neurosurgeon (seriously, probably one of the smartest people EVER) talked to us and explained to us our “options”. We could put her through some major surgeries and see if we could maybe get her to maintain her breathing on her own. He didn’t have high hopes though. She would never talk or smile or do anything other than be in pain. He was very sure she wasn’t conscious or aware of anything. The other option which turned out to be the hardest decision my husband and I will ever make in our lifetime, was to take the life support out and make her comfortable for the end of her life. They called it end of life care, I heard them, and I understood but it was all unreal. I felt like I was looking into my life from outside of it and it was some horrible nightmare.
That Friday, we decided to take Mellodi May March off the life support on Monday, two days after she was 7 months old. It was the worst decision we ever could have made for ourselves but the best for her. She fought so hard and her little body did the very best it could to fight off the bacteria. In the beginning I had said Mellie would tell us when she was done fighting and I knew she was done. She was ready, she deserved to be at peace and not feel anymore pain. Taking your child off life support is not something you can prepare for. But I walked into it without a clue, I’m not going to type out that experience. I do however suggest if you are in those shoes, talk to someone who has experienced it. Not a medical professional, not the church people, but a family member who has held their loved one during their last moments. It will still never be something you can prepare for or be ready to do. I can’t even say that talking to someone so you know the things to expect will be helpful, I just know I will do anything to ease that pain for someone else. I would take it away for strangers, its unbearable and the most unfortunate situation one can find themselves in. I pray if you are in the shoes that I found myself in a few months ago, I pray that your situation turns out different. I pray for every parent losing a child or who has lost a child. I still hurt every day; I miss her every second of every single day. I am writing this and starting this page because Mellodi's life may have ended at 6:49pm November 30th 2020, however her fight did not. We were fighting beside her from the beginning and we will continue. Her fight with meningitis was not lost. We will continue to inform parents of this devastating disease. Mellodi will help us defeat it someday. Her story will continue to be told. My story as her mother, I hope it helps other parents have a voice. Doctors are people and they make mistakes. We as parents know our children better then anyone else. I want to help other parents understand, if you feel something is wrong, DON'T leave until you feel like your child has had the proper care. I live with regret every day, I knew something was wrong, I let the fact that they were doctors make me question myself. I was not wrong, my daughter needed medical care, right then. If I would have stood firm behind myself. I could be sitting here holding my daughter rather then writing a story on a website in her memory.