JIA- Part 3

The MRI results come back that same afternoon. I see them in Cooper's chart.

"Synovial thickening"

"Enhanced popliteal lymph nodes"

"Question of synovitis"

There's that word again, synovitis. What does it mean? Inflammation. Lots of it. Something is causing the lining in his knee to be inflamed. But what?

The ordering doctor, the pediatric orthopedic specialist doesn't call me that afternoon. I call immediately the next morning. I want to know what this means. How do I help my son? I wait all day for a return phone call. Once we're connected, he tells me that he "remembered" and after "reviewing the literature" it confirmed that kids with Trisomy 21 have double the risk of inflammatory conditions. Okay, what does that mean? It means our next stop would be rheumatology.

At this point, Cooper has been limping for nearly seven weeks. I am desperate to help him stop limping. I don't really know what rheumatology is, but I call them expecting to have an appointment sometime in the next week. This is Tuesday, the day after his MRI. "We have an appointment in four weeks," they tell me. My heart drops. I am not willing to watch Cooper struggle that much longer. "Is there no way to get in sooner?" I ask. They say, "Sorry, that's our soonest availability."

I am frustrated by the waiting game. Of course, my son is not the only patient these doctors need to help. Of course, some waiting is expected. But another month of him in pain? I can't take it. I call the orthopedic doctor's office to see if he can help me get the date moved up. He never calls me back. I call the pediatrician's office to see if they can help me get the date moved up. The nurse tells me, "Wow, a four week wait is actually really good for a pediatric specialist!" As if I should be grateful for just another month's worth of waiting. The feeling of defeat weighs heavy on my mind and body. It feels like being in the ring with a world class boxer. I'm not knocked out yet, but I am losing the fight, and my odds of actually winning are next to nothing.

In all of my searching and reading literature online, I find a group of rheumatologists in Colorado who seem very up to date with the latest findings specifically for Down syndrome and arthritis. I make an appointment there, nearly two months away. I determine that I will call both the Utah and Colorado rheumatologist offices every day to see if they have any cancellations. Every day I wake up and wonder if Cooper will still be in pain, if he will still be limping. And every day, it seems worse.

His limping and saying, "owie" are its peak. I won't wait any more. I call the UT rheumatology office on Wednesday morning, two days after his MRI, and end up on the phone with a nurse (don't get me started on the way they have the phone lines set up, and how long it takes to get to a person). I ask her if I go the ER at the children's hospital, will rheumatology see my son there?

A pause. Then she responds, slowly, "Well, I guess technically you could do that."

I'm trying hard not to cry. "Well, don't you have urgent appointments? What do I have to do to prove my son needs one of those?" I'm not being mean or combative; I just want my son to have help more urgently.

"Yes, we do. You could call your son's doctor and have them call and tell us why he needs to be in sooner, and we might be able to do that." Ugh, I know that waiting game. That could take days, if not longer.

"So I have to have my son's doctor try to tell you he's struggling? Look, I know how long that could take. All I've done is be on the phone with doctor's offices and waiting for replies for weeks now. I know his doctor will do it, but his doctor isn't seeing him every day like I am. His doctor doesn't really know. I'm his mother. I am seeing him struggle every day." I pause to collect my voice as it cracks. "Don't you think my opinion should be worth more than the pediatrician?"

Silence.

Then, "I'm sorry, that's just the way we do it."

I try to breathe. "Okay, thank you for the information. Can you send me to scheduling? I'll see if there's any openings again."

After a moment, a man comes on the line. "I understand you want to check for openings for your son." The nurse must have given him a heads up about me- I wonder if she called me crazy. "We actually have one today, at 1pm." I look at the clock. We live three hours away, but if we leave in the next ten minutes, I can make it. I quickly text my husband. He replies, "Let's go."

"We'll take it," I tell the man on the phone. Doors are opening. I believe God is opening them for us. The appointment that should have taken four weeks, I now have in just two days.

Just the world's most patient toddler, letting me run the red light on him every single day.