First Rheumatology Appointment

Well, today was the day we had been waiting for all this time. We took Marian to her first rheumatology appointment at Egleston CHOA. We left extra early and knowing we were going to be using a route we were familiar with, and was a back road, we thought we'd have plenty of time...boy were we wrong. We got over halfway there and hit a traffic jam that held us up significantly. I do not handle this kind of stress very well, or any kind of stress actually, but this high level of stress, worried about losing her appointment and having to wait another 4-6 months, was almost all I could stand. I was shaking before we got there....it didn't stop until a few minutes after we got home, hours later.

So first, we went by the address that the internet search of the doctor's office gave us because on the initial setup for the appointment, we were not given an address, a phone number or directions. Just a date and time and "Egleston".

So we got to where the address in our GPS was taking us and it was Emory. All around us was construction....on almost every corner. It was chaotic and confusing. You all know how I handle chaotic and confusing, right? o.O

We went into the parking deck because we had no where else to go, traffic was pushing us forward and we didn't have the luxury of time to look and redirect. We parked in the Emory parking deck, which goes upward forever!!, and had to go to the very top to find a spot. I don't know if any of you are familiar with this parking deck, but besides being terrifying from how high it goes, it's very narrow in it's driving space. Not fun.

So we get out and we are already 4 minutes late. If you have kids who have to go to the doctor often, you know that they can be late, you can not. They can be an hour late or more, you have 15 minutes, 20 if you're really lucky. We had 20. From where I was standing on that scary parking deck, there was no way that I was going to find this place in 16 minutes or less...no way. So what do I do? I try to find a phone number to call them. And right now you are saying, "Well, Tina, why didn't you make sure you had the directions, the address and the phone number before your appointment date?!" And you'd be right! Why didn't I have all the information I might need? Because I am a total freaking mess!!!

Guess what? The number they have listed, 404-785-1775, for a Dr. Patricia Vega-Fernandez on the internet, leads to the voicemail of a woman named Stacy who apparently doesn't stay anywhere near her phone!!

By this time, the tears are welling up, I am making a complete and total arse of myself and making a huge scene on the top of this parking deck in front of everyone walking by us, because our appointment is slipping away, second by ticking second, and there is absolutely NOTHING that we can do about it. We are at the mercy of time.

I finally find the correct number. I call it and get yet another rude phone woman for this doctor's office. And while I know I should have been calm and held my tongue, I was too far past that point and I got kind of sarcastic with her when she asked me where I was.....   :/

I had already explained the situation. I told her I was standing on the top deck of the Emory parking deck and that I didn't know this area, but every direction was another hospital under construction and I needed help. So when the woman who was already being rude asked me, "Well, where are you ma'am?" I said in my very best hillbilly voice, "Well, I don't really know that ma'am, cause I'm from the bodunk south and I'm not familiar with this here area."
Probably not the best idea in the world as it didn't get me what I wanted but just more rude remarks from the other side of the line, so I just hung up and we went down to the ground level to ask people there.

They got us to the general direction, so we scurried off as fast as possible, and ended up at the information desk of Egleston. Our place was next door. o.O

We got there 23 minutes late. 23 MINUTES!!! And the lady says to us, "You're over your grace period for being late by 3 minutes, let me see if the doctor will see you anyway." Y'all, I was praying, I told Johnnie and Mary to pray and not just that we would be seen, but that when and if they came back out to tell me that she wouldn't be seen, I didn't end up in jail today. Because had they said no, I cannot guarantee I would not have blacked out (with how hard my chest was thumping and my head too), and hurt somebody. They have already made my baby wait 5 months just from initial diagnosis, because of policy, but another 5-6 months and I would have been out of my skin.

When they said she could still be seen, I almost lost it. I was holding back the tears as is.

So we got back in the room and she was registered by the rudest nurse in history. I am telling you, our entire experience with them, minus the x-ray tech, was horrible. Nothing like Scottish Rite. Then the first doctor comes in to examine Mary. His English was so broken, that we could barely understand him and he was getting upset with us for not being able to understand him. SMH
He examines her for quite awhile, and calls in Dr. Vega-Fernandez. She comes in and examines her almost the exact same way (all the while through these examinations, Aiden is going nuts and just being loud and horrible), so I ask Johnnie to take Aiden out of the room and she continues. They asked lots of questions and then Dr. Vega-Fernandez, who I understood better than the other doctor, tells the other doctor to explain things to me....omg!! So he does his college best, and this is what I got from it....

She has JIA, not JRA. And it's possibly systemic, which is what we didn't want. So she had tests done today and will have lots more done in the near future. She has to be back in 3 weeks and until then, I have to keep a daily log of her temps, her rash outbreaks, and her aches and pains.

Y'all, I haven't even really had time to process much, with the stress of the experience, Aiden and then Johnnie being stressed because of all of it too, my mind is total mush.

She went back for bloodwork and then x-rays. During the x-rays was the only time I actually relaxed a bit and had someone actually want to be nice to us. The techs could see the inflammation and swelling right away on the x-rays. We have had 2 or 3 prior x-rays where the previous techs told us there was nothing wrong, they were normal. We should have gone to CHOA a long time ago.

Now she has to go see an Ophthalmologist for her eyes to see if there's any inflammation there.

But tonight we are going to Stone Mountain with my brother and his family. We're going to watch the lasershow and to give the kids a wonderful memory. I hope it will be a relaxing fun time for our family....cause we need it so bad.

Please, if you follow us and you pray or whatever you may do, keep us in your thoughts. :)

Thank You. <3


Oh! And when we got home, I had missed a call from Clara's surgeon's office. I called them back and we scheduled Clara's second surgery of the summer, her bone graft and nasal revision. It's on June 27, but we don't have a time yet.