My son, Finnegan, got sick on his first birthday. Not so unusual, right? Except my kid didn’t get better. Days turned to weeks that turned to months; we saw pediatricians, urgent care and emergency room doctors, and internal medicine specialists, and we learned nothing. No one could explain why my baby was wasting away.
The kindest responses I got from doctors were “wait and see,” and “if there’s something wrong, it will materialize.” Other physicians fully dismissed my concerns and basically gaslit me.
Well, on April 27, 2010, it materialized. Half of my son’s face was paralyzed, he had lost 20% of his already small body weight, and he couldn’t take in food without vomiting.
We took him to the Munson Hospital Emergency Room in Traverse City, only to be told once again that the doctors couldn’t find anything wrong. I went to the records department and got copies of everything that had been done, and went home and poured through them. Symptoms pointed to diabetes, Dr. Google said kidney failure, and I was a friggen wreck.
I went to the pediatrician first thing in the morning and demanded tests to rule out both, but he told me they had already been done and there was nothing more they could do. Then he told me that if Finn were his kid, he would drive him to the emergency room at C.S. Mott Children’s Hospital in Ann Arbor.
So we did.
We got there too late that day to get an MRI because it required a special pediatric anesthesiologist not on duty, so Finn was admitted. Since only one person could stay, I held Finn the entire night while he vomited and screamed and thrashed. Every damn nurse and every damn doctor kept asking questions while I had to aspirate my son’s nose to get the puke out.
Finn was pushed to the front of the line to receive the first MRI of the day. I remember the anesthesiologist asking me what I wanted out of the visit, and it was the bajillionth time someone had asked me that, and I was just pissed. I knew he was sick. I knew he was dying. And I needed them to help my son.
When Finnegan was sedated, I got my first respite in months. I had to wear scrubs because I was covered in puke and didn’t bring extra clothes. I cleaned up and I think we were headed to the cafeteria because we were told it would be a few hours to get the results, but the pager went off after only 30 minutes. There was a sense of doom as we were led to a private office where we were told to wait for the doctor.
The anesthesiologist came in and told me Finn was indeed very, very, sick and they needed to image his entire body to get the full scope of his condition. We were then informed that his sedated blood pressure was 225/135. For those unfamiliar, that would stroke out an adult let alone a tiny, gaunt, 15-month-old.
The next three days were a blur as we took turns sleeping on the waiting room floor while Baby Finn literally fought his care. He was eventually sedated and intubated, which is when I overheard another parent say that the pediatric intensive care unit cost $8,000 per day. PER DAY. In 2010. After the housing crash.
Now, we’re fiscally conservative in the Farrell house, and even so, this was beyond our reach. We had no debt at the time, including our tiny home, which was probably worth $90K then. I got on the phone to our Realtor to sell the house. The realization that hit me that day is that we were separated as a family, we were going to lose our son, and our home, and we wouldn’t be able to afford to give him a proper burial. It’s devastating thinking back on that time.
That third day is when they sent us a social worker who got us a room at the Ronald McDonald House and signed us up for Children’s Special Healthcare, which is the insurance that worked with our private insurance to cover the costs associated with his diagnosis.
Finnegan spent nearly a month in the hospital (the first time), just to get stabilized. He spent another two weeks in the hospital a couple months later when he underwent the first of two renal artery re-implantations. The bill for just the first visit was $213,000.
Yup. Almost 3 times the value of my home.
We did everything right. We weren’t rich, but we sure weren’t poor.
My baby required 14 years of care. Fourteen.
Without Medicaid, Finnegan might not be turning 17 this year.
I cannot express the devastation that losing coverage will cost. But I want to.
I want you to ask me what it was like.
I want you to ask me about all the gaps in services I have seen.
I want you to ask me why I think mental health should have been included with his diagnosis because the effects of medical trauma are fucking real. Boys need support that isn’t there. Men need it too.
Now what do we have?
I don’t know the answer but I really want to talk about it.
Just ask me.
Please.
_____
Today, Finnegan has triumphed over his illness; the only physical remnant is a prominent horizontal scar that runs completely across his abdomen. He has no limitations and loves to bike, swim, and hang with his buddies. He’s a great student who loves to write for the school newspaper (yay), participates in Model UN, and is in the Spanish Honor Society with the hopes of becoming a translator. The trauma Finnegan endured is the silent scar that took years to resolve and required private-pay behavioral therapy.
Folks don’t realize what needs to happen to children in order to get blood, administer medications, or to prep for procedures. Kids are held or strapped down, sedation masks are forcibly placed on their faces, and they have to go without food or water for hours on end without knowing or understanding why. They scream and cry and fight; even with the child life specialists blowing bubbles and playing their favorite cartoons to keep them calm, toddlers just don’t understand what is happening to them, and that trauma inevitably seeps into daily life even years after.
When the pandemic hit, the smell of the hand sanitizer made Finn ill. He couldn’t stand to be masked, or to have his mouth covered. These were the trauma triggers we thought had been worked through.
Finn underwent play therapy, talk therapy, journaling, art, and exposure therapy to help him cope, and even though the medical trauma wasn’t covered under Children’s Special Healthcare as part of his diagnosis, it was money well spent: Finnegan is the most emotionally intelligent, kindest, thoughtful, helpful, loving young man I have ever known, and he has a phenomenal sense of humor.
