Surgery

Lee had his surgery today. A few times, I’ve mentioned the name ‘Lee’ and the word ‘surgery’ in the same sentence, and received horrified looks that took me by surprise. I registered that incredulous look, and was quick to correct the assumption. Not THAT surgery. For God’s sake, he’s ELEVEN.

Today’s surgery was to insert a tiny implant into his upper arm. This implant will administer the puberty-blocking medication that he previously received through painful injections every three months. Those injections were awful. They were anxiety producing and painful and three out of four times resulted in vomiting and/or fainting.

This implant was hard-earned. We live in a state where transgender rights are supposed to be guaranteed and where full-coverage insurance plans are required to cover the cost of transgender care… so I naively assumed that we wouldn’t have any problems. I was wrong.

The first injection, in terms of procedure and billing, was relatively uneventful. The problems didn’t start for us until after the second injection. This one was billed incorrectly. If you’re in the field of medicine or medical insurance, you may notice problems with my wording. That’s because I don’t really understand the different terminology and how it affects coverage and billing. I’m learning quickly, but please forgive any errors. It is my understanding that this second injection was billed through the pharmacy, and fell under the category of a ‘prescription drug’ benefit. Billed this way, I was required to pay substantial co-pay. But the first injection (unbeknownst to me at the time) had been billed as a ‘medical procedure’ and was fully covered.

When I called to find out why the second injection cost so much, and the first one had been covered, the runaround began. The endocrinologist transferred me to billing. Billing transferred me to the specialty pharmacy. The pharmacy transferred me back to the endocrinologist. Ultimately, they decided it wasn’t their problem, and told me to contact my insurance company.

My insurance company sent me to benefits, where the representative insisted my plan did not provide coverage for this drug. When I pointed out that they already had (three months ago, for the first injection), they transferred me again. The next rep couldn’t explain the discrepancy, and I finally asked to speak to their transgender care specialist. The specialist told me that it had to be billed as a medical procedure, and then suggested that I call the hospital to explain that.

This series of endless phone transfers and arguments lasted nearly six months before it got entirely fixed. My past-due medical bills were sent off to a collections agency, which further added to the mess that needed to be resolved.

In the meantime, we were slowly finding out that these injections just weren’t a good fit for Lee. There was crying and nausea and vomiting and fainting. We tried numbing creams and different needle gauges and different injection sites, to no avail.

As we tried to navigate the next steps, advocating for an implant instead, we encountered more challenges. While the endocrinologist (who is trying to establish a transgender clientele), was reasonably consistent about using the correct name and pronouns, every time we found ourselves in another department (for necessary blood work or bone scans, for example), the staff would use the wrong name and pronouns.

Now, I understand that this is a complicated issue. There is a name and gender listed on the medical record, and it makes sense that staff would assume the accuracy of this information. However, a practice seeking to establish a specialty in the area of transgender care SHOULD, at the very least, have a note in the file indicating ‘name used’ or something similar. Our pediatrician gets it right. Our counselor, the pharmacist, the dentist… even standardized test scores at the state level… they all get it RIGHT. So when we’re at the hospital in order to receive specialized TRANSGENDER care and treatment, you’d think they could figure out a system whereas a timid, eleven year old boy doesn’t have to stand up and answer when a nurse shouts, “Leah? LEAH? LEAH?” in the waiting room.

Sorry. I digress.

So we begin the process of advocating for an implant. But the endocrinologist tells us that our insurance won’t cover the procedure. I call the insurance company, who tells me that we should appeal the decision. But wait. I can’t appeal yet, because there has been no official request and no official denial. So the insurance tells me to contact the endocrinologist again. I have an appointment coming up, so I decide to talk to them after the next injection.

You might already see that this was a poor decision. Lee had the injection. Afterward, as I’m talking to the hospital staff and trying to resolve this issue and figure out the next steps, my poor, strong, brave little man faintly whispers, “I don’t feel very good” right before he drops to the floor in the lobby and begins to dry heave. He vomits into a trash can and I sit on the floor holding him in my lap and stroking his sweaty head and telling him it’s going to be okay; all the while thinking that I need to just focus on my child and not let him see my frustration with all of this bureaucratic nonsense.

A few more weeks and a few more phone calls finally result in a long-awaited approval from the insurance company. They’re going to cover the implant! We get excited. We book the surgery. We meet the surgeon and ask all of our questions. We come in again a week before the surgery for a last minute check of height, weight, and vitals. We ask more questions. We take the day off from work and school. We plan where we’ll go out to lunch after the procedure. We celebrate.

The day before the surgery, we finalize details. I write my sub plans. Lee fasts. My husband reminds his boss that he won’t be working the next day.

And then… surgery day. Finally! Lee is grinning from ear to ear. He good-naturedly complains about not being able to eat. He jokes and smiles and carefully chooses what he’s going to wear to the hospital. He brings his drawing pad to keep him occupied and to give him something to show to the nurses. He is the star of the show. He asks good questions and patiently plays card games and board games and iPad games while we wait for the surgeon.

When the moment arrives and the surgeon walks in, we can tell right away that something is wrong. You can see the sadness and embarrassment on his face when he explains that we can’t do the procedure today because “the implant isn’t here.” He apologizes profusely and explains that it didn’t arrive in the pharmacy and that they’ve tried to locate another one and that there isn’t one “anywhere in the city” and that he knows people have taken the day off of work and school and that this shouldn’t have happened and that he’s very, very sorry.

I cry.

My son is incredibly composed, albeit visibly sad, but I’m no longer capable of hiding my disappointment. This was a big day. We’ve been working and waiting and praying for so long. Through clenched teeth, I ask the surgeon to call the endocrinologist to determine the next steps. Should we do another injection? How long can we wait? How soon can we reschedule?

The surgeon leaves the three of us in the pre-op room, and I apologize to my son. I vent a little to my husband, and we brainstorm possibilities for the next steps. And a few minutes later, the surgeon returns.

He’s contacted the endocrinologist. She says it’s here. Two days ago, she was contacted to confirm that it had been received. She was going to make some phone calls.

Ultimately, what I learned is that there’s a difference between the Specialty pharmacy and the Operating Room pharmacy and that drugs aren’t always stored where you think they would be stored and that doctors make mistakes.

But this story has a happy ending. They found the implant. They wheeled my son into surgery and I suited up in one of those white paper suits and blue shoe covers and a really sexy hairnet. I wore a surgical mask and held his hand and made him smile while he breathed in the gas that would put him to sleep.

The surgeon did his job. He inserted a tiny piece of plastic containing some amazing medication in my son’s upper arm. He assured us that everything went smoothly and gave my son permission to skip showering for the next two days (God help us all). My groggy son said everything that crossed his mind when he woke up, much to my chagrin and the nurse’s apparent entertainment.

We stopped for saltines and chicken soup and said grateful prayers on the way home.

And for now, we’re taking a break from fighting the hospital and the insurance company and trying to understand medical billing. For now, we’re going to cuddle on the couch and eat crackers and watch movies until the stress of this long, emotional day evaporates into a fog of contentedness… for we are abundantly blessed.