Here’s the latest chapter in our SJIA saga. (It seems to have fallen out of fashion to call it “SOJIA.” Now it’s just “SJIA.” Like the teenager who wants to be called “Tom” instead of “Tommy,” I’ll try to accommodate the new name…but he’ll always be “Tommy” in my heart.)
We ended up doing another up-and-back to Mayo on Thursday, canceling the appointments on Friday and opting to go home instead based on the results.
Cee gets very uncomfortable after long car rides, but fortunately she made it to Mayo without tears. We squeaked in right before the appointment time, so David went to park after dropping Cee and me off at the door.
Our first stop was xrays. The radiologist was brusque.
CrabTech: You going to stay in here?
Me: No…I’ll go to the waiting room.
Me: Are you going to cover her ovaries?
CrabTech: For two of the pictures.
Me: (upset because I can’t even protect Cee’s d-a-m-n ovaries) Okay. I’ll go out now.
Me: (sitting down in the waiting room for 30 seconds)
CrabTech: (opening the door, sounding irritated) Is this all she can move? Or is she just nervous?
Me: (going back in to Cee on the table) Let me see. I thought they would have put in the notes that she has limited mobility.
CrabTech: They didn’t.
Me: (showing her how much Cee can move) This is about as far as she’ll go.
CrabTech: (visibly irritated) Well, we’ll just try it like this.
Me: Sorry. This is as much as she’ll move. I’m sorry; I assumed there would have been a note…
CrabTech: There wasn’t.
Me: Okay… (leaving the room, trying not to cry)
Cee came out, I helped her get dressed, and we returned to the waiting room for our next appointment.
Next up was the pediatric orthopedic doctor appointment. Well, sort of that was the next step. The next step was actually the “doctor with training wheels” they send in before the actual doctor.
(Aside from his name, this is pretty much how it went down.)
Practice Doctor: Hi, I’m Joe Newbie. Let me ask you a bunch of questions.
Me: (answering all the questions)
Practice Doctor: (looking at xray images) This is bad. It’s bad.
Me: Okay…so what does that mean?
Practice Doctor: You just don’t see pictures like this from an eight year old.
Me: So what do we do? What are our options?
Practice Doctor: I’ll let Dr. Orthopedic talk to you about that. I’ll go fill her in. (shakes our hands) Nice to meet you. (leaves)
Me: … Do you think “bad” is a technical term?
David: Well, we knew this was how it was going to go. He had on his “my first real job” suit.
I’m tired of all the doctors with training wheels. I know they just send them in to practice collecting information and talking to real people. At least they could have us fill out some sort of critique afterwards. That would be sort of therapeutic.
Dr. Joe Newbie: A Review
Good eye contact
Asked a few questions that revealed he had no idea about SJIA
Used the vague descriptor of “bad” to describe results
Seemed obviously surprised at patient’s condition
Offered little actual useful information
Conclusion: I don’t want a doctor to approach my child with the same novelty with which you’d approach an exotic animal at the zoo.
(Wow! Look at this pangolin! See how his feet are? Look at that tail shape? Isn’t that interesting?!?! )
We saw Dr. Orthopedic afterwards. She didn’t offer much either. I did learn how a hip replacement actually works, though.
Before the appointment I would have lumped “hip replacement” with “root canal” and “bypass surgery”– medical procedures I’m glad exist, but sure hope I never have to deal with and don’t really want to hear about.
With a hip replacement they cut off the top of the femur and replace it with a plastic/metal ball and socket.
Ummm…no thanks. I’ll take the root canal instead, please. Can we get in line for a root canal instead? Where’s the root canal line? No?
There’s more to it as far as what happens on the pelvis side of things, but I couldn’t really concentrate after the words “cut off the top of the femur,” and I’m too scared to google it. Just the thought of it makes me erpy.
Obviously, once that step is taken, there isn’t any going back. You never can have your hip back. And since so much bone is removed in order to anchor the artificial joint, it seems to be a bad idea while Cee is so small. There are issues with infection, rejection, and device failure.
Nowadays there aren’t many hip replacements done on the kiddie crowd because the big-gun medications have mostly eliminated the need for them. The big-gun medications are protecting joints.
Part of the reason this is so troubling is because she is on such major medications AND THIS IS STILL HAPPENING. She lost a hip’s worth of cartilage in four months. And there’s nothing we can do to stop it as it’s happening on her other hip. We are on a train and unable to do anything save hold on tight as it hurdles down the track.
I did lose it while Dr. Orthopedic was in the room. “We’ve played the game,” I choked out from behind my tissue. “And there’s nothing we can do?”
So. Understading. Dr. Orthopedic was so. understanding. at the rarity and severity of our situation.
CAN WE PLEASE STOP BEING SYMPATHETIC AND SURPRISED, PEOPLE? These are not characteristics you want from your doctors. I’ll take aloof and knowledgeable over sympathetic and surprised any day.
“I’ll go confer with Dr. Rheumatology. Maybe there’s something medication-wise that he’ll suggest.” With that, Dr. Orthopedic was able to escape.
“Buy a lottery ticket,” I said to David, “because we just graduated out of the Mayo Clinic. ” He smiled. Only a little.
When we’re stressed out we fall into predictable patterns. David retreats inward. I act like I’ve had a few (I don’t really drink…but it’s how I imagine I would be if I did). All the sudden I get louder, with big gestures, laughing too hard in all the wrong places. I challenged David to a thumb war while we waited for Dr. Orthopedic to get Dr. Rheumatology and threatened to examine the thumbs of anyone else who came into the room in order to see if they were stubby-style (like mine) or hitch-hiker (like David’s).
Dr. Rheumatology is great with Cee. His knowledgeable nerdiness and sense of humor have been a blessing to us these past four years. We’d like to invite him over for sweet tea (seems appropriate given his slightly southern speech), but that would probably be weird. “Hi, we’ve known you for four years, and you’ve seen us cry. Want to hang out?”
At any rate, we trust him. But he admitted that he has nothing else to offer. When we started this last infusion medication (over a year ago?), he had said that we’re sort of at the end of the line. There aren’t many (or any?) other medications to try.
Cee will need to have her hips replaced. The question is when. In the mean time, we need for her to move as much as possible through the pain so that when she’s finally able to have her hips replaced, there’s enough muscle and such to make it possible.
Is that a firm “no” on trading for the root canal, then? Yes? Okay.
The therapy pool is the only way that Cee really moves, so we need to up our therapy game. That’s it. All we’re left with is increased swimming until the magical time when Cee can have the tops of her femurs sawed off. There are several heated pools in the area, but the logistics of how we’re going to make that work, several times a week is overwhelming.
We have one more card to play in this game, an appointment with The Guy.
Dr. Rheumatology is working to get us to see The Guy in pediatric rheumatology, a doctor at Cincinnati Children’s Hospital. They think they can get us in at the end of March, beginning of April. With only the fuzziest of details we can’t do any planning. Cee wouldn’t handle a car ride, so we’d fly. But when to fly in and out? Will it be one appointment or multiple appointments? Do we take the kids and make it a vacation? Or do we pawn off the other kids and take just Cee?
And thus begins the next chapter of question marks.
So, this is where I’d like all the stories about people you know who are living large after hip replacement. Your great aunt Bernice? Albert, your 80-year-old neighbor? Harriet, the oldest old lady from church? Bring on all your hip replacement success stories!
If you don’t have any grandmas or great uncles who have gone through it, how about Cincinnati info? What should we be sure to see or do while we’re there for a super stressful last-ditch attempt at answers appointment? Anyone have friend out there who could pick us up from the airport so we don’t have to rent a car?
And, if you don’t know anyone with artificial hips or anything about Cincinnati, could you just tell us that everything is going to be okay? We’ve had enough truth for a little while…how about a few rose-colored lies? Maybe involving unicorns and rainbows? That’d be nice. Thanks in advance.
PS– Dr. Rheumatology has hitch-hiker thumbs. In case you were in suspense.