I had a come-to-Jesus moment recently, and it has shaken me to the core. Forgive the length, but I have a story to tell.
About two months ago, just days before her 17th birthday, my daughter was taken to a local urgent care facility. She was running a fever, was complaining of pains in her chest, and was extremely dizzy. Thinking she had some sort of upper-respiratory/flu/inner ear infection thing going on, I didn’t panic at first. In fact, I had meetings scheduled all morning, so I had my husband take her in so that I could continue working.
Roughly an hour after they left, my husband called me. He told me that the doctor had seen “something” on an MRI that concerned him. As a result, they were loading my child into an ambulance, and transferring her to the closest emergency room. This was the first time I’d heard the words that have since changed our lives:
They are concerned she may have a blood clot.
She’s 16, for heaven’s sake! She’s healthy, she’s an athlete, full of life and vitality. Teenagers do not get blood clots.
I rushed to meet her in the ER, where the doctors ordered some blood work. Specifically, something called a d-dimer test. While far from fool-proof, this test can help doctors in their quest to diagnose patients with symptoms similar to my daughter’s. If the score is below a certain number, blood clots are not a concern. If it’s higher than a certain number, it’s possible a clot has formed somewhere within the body. The higher the score, the more likely a clot is present.
My child’s score was so high, they couldn’t chart it. The test only goes up to 5,000, and her numbers were “somewhere” above that.
It was all-but certain. My daughter has a blood clot, probably in her lung- a pulmonary embolism if you want to get fancy with it.
The doctor immediately ordered a CT Scan, and while we waited for the results, I hoped against all hope that this was a fluke. That they’d come back and say, “False alarm! There’s no clot! This is nothing a little cold medicine can’t fix!” Part of me knew, however, that I was in denial.
After viewing the scanned images, the doctor told us what we dreaded hearing: our child definitely has a blood clot in her lungs, possibly two. It was either one very large clot that started in her lower lung and curved up to the mid-way point, or it was two clots. Hard to tell. Regardless, immediate action had to be taken.
As he gave us the news, I glanced at my daughter, just in time to see a single tear roll down her cheek.
I was numb.
Arrangements were made to transport her by ambulance to the Children’s Hospital in the city, as the hospital we were currently at was not equipped to treat her. The doctor explained that due to her age, she’s still a pediatric patient, and needed to be admitted to the “PICU”. Nodding my head, I went through all the motions, signed the paperwork for transfer, asked the appropriate questions, and did the best I could to keep everyone calm.
I began calling my parents, my boss, various family members to tell them the news. I felt like I was watching myself talk as I explained what I knew up to that point. Almost as if I was observing things as they happened, but was not actually participating in any of it.
My husband had briefly left the room to make some phone calls of his own, and wasn’t there when the doctor explained the need to get her to PICU by ambulance as soon as possible. When he returned, I filled him in, but stumbled on my words…
It was then, as I stuttered out that dreaded acronym, that it hit me. Pediatric Intensive Care Unit. My child could die.
I quickly ran from the room, my tears were hot on my face, and I didn’t want her to see that I was afraid. I rounded a corner somewhere, and leaned against the wall, sobbing. All I could think was that I’d thought it was the flu.
I treated my daughter’s pulmonary embolism for the last 48 hours with Nyquil. Who does that?
I tried my best to pull myself together, and the ambulance eventually arrived. Climbing in behind her, I held her hand as we raced to Children’s Hospital, trying to ignore all the beeps and buzzing sounds coming from the various pieces of equipment they’d attached to her body, monitoring… what, exactly, I didn’t know.
She spent two nights in the PICU, with a 24-hour-a-day heparin drip. Her blood was drawn every four hours, and though she was in pain, she couldn’t take pain medicine because of the impact it could have on her blood. They had to monitor her “levels” so closely that they couldn’t risk allowing her to ingest anything that could skew the test results. The heparin, I learned, is a powerful blood thinner, designed to begin the slow process of dissolving what we now knew to be one massive clot in my baby’s left lung.
I spent those nights on the pullout chair in the room with her. She could only have two visitors at a time, which annoyed various family members, as I refused to leave the room, except to pee. That meant only one other person at a time to see her. I didn’t care.
The blood thinner was so strong, she started bleeding randomly. Her nose would bleed, or her gums when she brushed her teeth. Just days before she’d been so full of life, so vivacious, but now, I didn’t even recognize her. She had huge bags under her eyes, and she looked so tiny, hooked up to all those IVs and monitors.
I felt powerless. It is my job to keep her safe. I’ve protected her from the outside world her entire life. She wears her seatbelt any time she’s in a car. I have the passwords to all her social media accounts. She has a curfew. She can’t go to parties without an adult present. But you can’t save your kid when her own body revolts against her. While I was worrying about car accidents, something was happening inside of her. It threatened to kill her, and I had no idea.
Eventually stabilized, the doctors moved her from PICU to a regular room on another floor. Now that her “levels” were where they needed to be, she was taken off the heparin, and put on another, less drastic blood thinner called Lovenox. It’s an injection, and she had to learn how to give herself the shots twice a day before she could be released.
The focus shifted from life-saving measures to finding the root cause of the clot. Blood test after blood test was conducted. Questions about family history were repeatedly asked by specialist after specialist. I felt I had failed her again. I couldn’t answer questions about family history, because I’m adopted, and have no medical records whatsoever. Genetic tests, it was decided, had to be run instead.
Finally, we had our answer.
It turns out she suffers from a clotting disorder called Lupus Anticoagulation. In addition, she has received a diagnosis of Lupus. The two aren’t necessarily related, despite both containing the word “Lupus”. This isn’t something she will heal from, it isn’t something that she can simply move on from.
No, this is life changing.
Lupus, for those who don’t know, is an auto-immune disease. It’s caused by an over-active immune system that is unable to differentiate between one’s healthy cells and viruses. As a result, the immune system is always in “fight” mode. When there is no illness to fight, it attacks the body. Specifically, the organs. Kidneys, lungs and the heart are especially vulnerable. While in “fight” mode, one can suffer various symptoms, referred to as a “flare”.
The blood clot, it turns out, was a blessing in disguise. Prior to its forming, my daughter had no symptoms of Lupus. It’s likely it wouldn’t have been diagnosed for many years, had it not been for this event. As a result, we found out about it before any damage was done to any of her organs. While there is no cure, we can treat this disease aggressively. We have a new definition of “normal”, but also know she can live a full, active and long life despite the changes we know we all need to make.
She was on the Lovenox injections for several weeks. Ultimately, due to her diagnosis, and because we now know she will need a daily dose of blood thinners for the rest of her life, the decision was made to transition her from the injections to an oral medication. She now takes Warfarin daily, along with Plaquinil to fight the Lupus.
Her clot is not gone. That will take many months. We have standing orders at the hospital to have her blood drawn every few days to check her levels. The doctor tweaks the dosage of her medication according to the test results, so we spend every other day or so at the pharmacy getting prescriptions filled, and at the lab getting blood work done…
… over and over again.
She is my hero. In two short months she has gone from lying in the PICU, hospitalized for a week, to defining a new “normal”. She has returned to school full-time, and despite missing several weeks, she’s back on the honor roll. She is also the sole student in her school district to be nominated for a scholarship to a college in our state. She has returned to cheerleading (though she cannot participate in any stunts or anything else that can cause bruising, because she is at risk of internal bleeding). She even has a part-time job as a server at a local restaurant.
With a renewed commitment to service, she has spearheaded a fundraising event (a talent show at her high school) to raise funds for the Ronald McDonald House, an organization that made our stay at the hospital so much less worrisome and dreary than it otherwise would have been.
This, she has decided, will not define her.
Watching her fight- for her life and later, for her quality of life- has changed me in ways I cannot begin to describe. What I do know is that I need to follow her lead. Renew my commitment to myself, to my husband, and to our other child, who at only 10 years old, has been yet another source of strength, determination and dignity throughout this entire ordeal.
In short, I need to be present. More present than I was before, and I need never take anything for granted again.
Many changes have already been made. More are sure to come.
I have been given the most amazing second chance with the most beautiful family on the planet. I can’t wait to show you what we all can do!