I sit here watching my youngest child sleep. And she looks completely normal. Like the past month hasn’t happened. Like their isn’t a “rare abnormality” living on her spine. That she isn’t on an intense drug to help with her nerve pain so that she can live a semi normal existence right now. That I didn’t hold her tiny body writhing in pain while the doctors said they couldn’t help her, and I cried because I felt completely helpless. And that the stress of even getting to the place of a diagnosis never happened.
So how did we get here?
It started on Monday morning at 4am when my 3yr old woke up screaming in pain. She was saying that her neck hurt, to the extent that we were not even allowed to touch her. I brought her into our bed and thought “Huh, she must have slept on it funny.”
But you can bet your sweet ass that at 10am that morning when she called for me crying saying she was scared because the world was black and she couldn’t see anything, that we got immediately into the car and went to the closest ED. By the time we got to the ED she was saying she could see but everything was fuzzy. Regardless the doctors did little to nothing and sent us to a local children’s hospital where I held her sobbing for 2 1/2 hours just to get a room.
The staff their ran an assortment of blood work, and did a spinal tap to rule out meningitis. When everything came back negative they sent her home with the diagnosis of a sprained neck and a prescription for a narcotic drug for the pain. In total from the time we left our home, we came back 11 hours later exhausted and eating ice cream.
The next morning seemed normal enough. She got up playing with her brother and sister and we naively thought we were past the worst of it. Mid morning she melted. Screaming in pain saying now that her knees, thighs, low back, neck and head hurt. We rushed to fill the prescription for the prescribed narcotic. Tuesday into Wednesday afternoon looked the same. She would take the prescribed med, she would sleep a few hours, she would wake up screaming in pain, we would give her tylenol to tide her over till she could take the prescription painkiller again, and then she would go back to sleep. Then we called her primary to check in. Because none of this seemed normal, at which point she sent us to a different childrens hospital, the Strong Golisano Children Hospital.
(I am going to stop here to go on a rant before I go any further. I cannot speak highly enough about this hospital and its staff. They are the epitome of excellence and I can not thank them enough for all that they did for our daughter.If anyone needs pediatric care in the greater Rochester NY area I recommend them with a 5 star rating)
In the ED their they ran more blood work, got X-Rays, and were at a loss. It was the same as the first visit to the ED. They ran a bunch of tests and came back with nothing. They asked me what I wanted to do. Did we want to go home or did I want to admit her? I am forever thankful that they asked me, and encouraged me to follow my mothers intuition. I said we needed answers and just like that, they got us a room.
When they brought us to the room it was so nice that while riding in the hospital bed with my sleeping child at 1:30 in the morning I asked them to stop and confirm that my insurance would cover what seemed like a hospital suite. I don’t know what I would have done if they said no. Would I have told them we were all set and head home? Regardless they said they accepted Medicaid and that if for some reason it was not covered they would help me find help with paying the bill. I exhaled and said they could bring us in.
Now I have never been hospitalized for more than a day procedure. Nor have any of my children. My son was born in a birthing center and I left their early (because I wanted to be at home in bed with my husband and newborn) and my other 2 babies were born at home. This was a whole new world for me. It was a stelar room with a great view. But it was alien to us both. I spent my days in a haze of helping my daughter navigate her pain, coordinating a pain management plan, and meeting with doctors, neurologists, surgeons, and hematologists around the clock.
In between all of this, in the times where she felt better, she was just a noral (though exhausted) 3 year old. We visited the play room, explored the hospital, enjoyed the sound garden, and had SO MANY PEOPLE drop off toys, food, and never ending love and support. Even just writing this I am brought to tears by the support we have in our lives. Everything from clothes and tooth brushes, to ice cream and chocolate. Each hug gave me a little bit of fortitude to navigate the troubled water ahead. We had everything we could possible need.
Except of course our family. Due to COVID there was no way for my other children to visit the hospital. The best we could do was play with them outside in the concrete soundgarden. Which after about 20 minutes would put my daughter in so much pain she would be bedridden for hours.
Their were twists and turns in our hospital drama plot. Their was the time she randomly vomited. Or the time that no amount of medicine seemed to help her pain and when a bewildered nurse looked at me and said “I don’t know what to do!” Without missing a beat I responded “I need six ice packs and Moana on the TV.” I sat and held her with an ice pack on the top of each shoulder, one over her chest, one over her upper back, one over the back of her head, and I help one over her forehead while she watched Moana and calmed down. Or time time we had a “spa day” and I sat in a mumu with a face mask on and painted our nails.
Then there was the day she had her MRI. Unfortunately they only do in patient MRI’s in the afternoon, so because she couldn’t eat before hand, this meant not eating until after her scheduled 3pm 2hr long MRI. I obviously had qualms about this as a mother, but given the fact that being a mama bear bitch wouldn’t help anything I focused my energies on distracting my daughter from her discomfort.
Now when I was told I could just wait in my room for my daughter to be wheeled up after waking up in PACU, I (to the best of my abilities) calmly stated that I would be by my babies side when her eyes opened. So they agreed to let me meet her in the PACU and said they would call me when she arrived. After 2 1/2 hours and no call I followed the instructions to find the PACU and got unbelievably lost. I busted into a random section of the hospital found a secretary and started sobbing saying I could not find my baby. I clearly looked like a crazy lady. This angle masked as a secretary spoke to me in a soothing tone to get the information she needed, made numerous phone calls, and finally informed me that the MRI was actually going to take closer to 3 1/2 hours and they were sending someone from PACU to find me and walk me to the right place.
The MRI gave us the information we needed. A hematoma on her spine. Essentially a bruise that clots. Because it is on the spine it is pressing on her nerve endings causing the mysterious pain all over her body. They can be caused by spinal taps, but because she had some of the same symptoms prior to the procedure they were hesitant to blame it on that, especially since 70% are spontaneous in this age group.
So after running a few more tests, talking to a few more doctors, and doing a bit more blood work she was given the thumbs up to go home. With 5 weeks of follow up visits scheduled including another MRI to make sure the hematoma was resolving itself and not needing surgery.
So that was it, a week later and we had a diagnosis. Since her coming home we had to go back to the ED because she spiked a fever and they wanted to rule out an infection in the hematoma. Many of the staff that we had met the week before come in to say hello and to check on my daughter, saying they had tracked her progress because it was such an interesting case. Turns out the poor thing has a virus now too, which she has lovingly shared with me and her brother (I write this from a mucus filled daze.)
I told my husband the other day, that I know they don’t make a girl scout badge for ED visits, but even so I still deserve one. Because I know in my heart of hearts I did everything I could for my baby girl. That I advocated like a champ, and made the right calls, and never left her side. It got to the point on the third day, where a nurse told me they could play with my daughter so that I could “take a break”. I kindly said “Thank you, no thank you.”, because there is no break in a situation like this.
The experience is still lurking in my bones, it jumps to my throat everytime I looks at her. That unknown, of checking her for everything from Lymes disease to deadly tumors. I am living in a hypervigilant existence of watching every step she takes to make sure she isn’t losing mobility in her legs, indicating that she would need immediate surgery. Knowing that it isn’t healthy to live this way, and also knowing I would NEVER forgive myself if I missed something that could lead to her paralysis or death.
When I go to work and explain to someone the situation and they ask me why I am not home, I explain that my kids still need to eat and being a small business owner there is no paid family medical leave. That I am lucky to have chosen a profession that helps ground and center me. That I am in a state of living yoga right now, in trusting the universe that we will come through this experience stronger and more appreciative of each other.
So I sit. And I wait. And I breath. And I write.