I wanted to share with you what our family has gone through this past week in hopes of helping someone else. I'll just put the basic idea here in case you want to skip the rambling: My 6-month-old daughter was acting lethargic and the hospital tried to brush it off. I insisted something was wrong and it turns out she had a life-threatening infection.
So let's go back to earlier this week. My daughter just started daycare on Wednesday, going half days to ease into it. My mother-in-law picked her up Friday and said she was feeling very hot.
At first, I didn’t think much of it and attributed it to her first daycare illness; her brother was sick all the time when he first went.
Then my MIL sent me a video of my daughter lying in the pack 'n play just staring into space. I instantly knew something was wrong as she’s usually very active and bubbly. I flew out the door of my work to take her to the doctor.
When I got to my MIL's house, she was just moaning -- not crying but groaning.
She was also blinking very strangely like her head was in pain. It turned out our pediatrician was closed for the day already (even though it was 2:30 p.m., wtf doc?) so I just drove her straight to the pediatric hospital nearby.
When we got there, they said she did have a fever of 102 degrees and appeared congested. I told them I don’t care about the congestion. I'm very worried about her lethargy and the weird, slow blinking she is doing.
The nurse insisted she was just acting like that because of her fever.
They suctioned her throat because she was drooling significantly and had some mucus, gave her Tylenol, and told me she must have RSV, a common respiratory virus. I told them she already had RSV months ago but they insisted and they sent us home.
Saturday went by in a blur as she had high fevers that wouldn’t go down with ibuprofen and Tylenol on rotation. I took two showers with her to help bring the fever down. I kept reassuring myself that this was normal for a viral infection and it would get better in a few days.
Sunday we had a family get-together for Easter and my daughter took a turn for the worse.
She slept the entire time, and when she was awake, she stopped wanting to move. She wouldn’t turn her head and look at me; she wouldn't move her arms. She also stopped eating and peed only one time the entire day.
I was terrified. I told my husband we were leaving right then to go back to the hospital.
As we were leaving, my father-in-law pointed out her neck seemed swollen.
Once we arrived at the ER, we were taken back right away. When they came in they said, "You were here Friday right for her cough?" I said, "No, she actually never had a cough but the nurse insisted he knew her better than what my concerns are.”
She could immediately tell I was very stressed and upset, and she asked me to tell her everything that was going on. She said she would give her some Tylenol and IV hydration and see how she was doing because she felt her lethargy was due to dehydration.
I told her absolutely not and asked her to please just humor me and check her blood.
They blood test came back showing a white blood cell count of 31,000 and her inflammation markers were high. The doctor said it was highly unlikely to be caused by a virus and she most likely had a bacterial infection, so we would be admitted.
They ended up doing an X-ray of her neck that was inconclusive so they did an ultrasound that showed the swelling. They ultimately decided to do a CT scan and said the risk was less than the risk of them missing an infection.
After the CT scan, we got a final diagnosis. My daughter has a retropharyngeal abscess, which is essentially a pocket of infection between her airway and spine.
For her age it's incredibly rare and could require surgical drainage if the IV antibiotics she's on don’t reduce it. We will be here for the week.
I had strep throat weeks before she got sick. I had taken her to her pediatrician and asked him to check her for it, and he advised babies her age cant get strep. While in the hospital, we found out that her infection can be caused by the strep bacteria, so I speculate she got the infection that way but we can't be entirely sure.
Seeing her sick was the worst experience as a parent so far. The worst part of the whole ordeal was they kept making her NPO (nothing by mouth) and she would cry for food. I felt like I was the one person who was supposed to be on her side and I was ignoring her. I broke down to a nurse and had to stand outside the door for a few minutes to compose myself. Luckily, she is doing so great now! Happy and healthy just like before.
Parents, please, please trust your instincts! You know your kid better than anyone. Don’t let someone tell you something is fine when you know it's not.
I'm kicking myself for not standing up for her Friday. If you feel something is off, fight for what you think is right. It doesn’t matter if you come off as a pushy parent, your child is way more important. After this nightmare experience, my attitude has changed.
This post was written by a mom who asked to remain anonymous.