[[addendum added **]]
Okay so if you read this blog regularly or even irregularly, you may recall the nightmare I had getting Thomas’ Prograf filled so he could have his oral surgery done in the first place. If you don’t, you can read about the nightmare here and then the good news here. (those links open up in this same tab/window, so just hit back to come back here)
First of all it dawned on me this morning that the office where he was supposed to be having this surgery didn’t call me at any point this week to confirm the appointment. I had meant to call yesterday afternoon to get directions and failed in that. So at 8am, I called to get directions and to make sure the appointment was today before I woke Thomas up since he handles morning worse than I do. The directions they gave me were no better than the ones I got off GoogleMaps, and they told me they don’t have a policy about calling to confirm appointments.
So I got Thomas up, he showered, took his medicine, and woke up a little bit, then I got him into the car and turned it on so it could warm up while I scraped the frost from the windows. After we chipped loose from the parking lot, we made our way toward Nicholasville Road. Only me being me and not doing day well by any stretch of the imagination, I got caught up in the flow of traffic and forgot to turn at Albany Road and had to aim for Old Dobbin. Big deal. I know my way through the neighborhood.
We get there, and by now the Xanax Thomas had taken was starting to get to me. He was giggly and kinda limp and said he was a bit dizzy. I pulled into the parking lot, and he laughed and said, “WWwwhheeee!”
Neither one of us liked the looks of the buildings we saw or the condition of the parking lot. All were crumbly and not taken care of at all. I should have seen it as a bad omen and gone home.
We finally got into the office, and I signed him in, and the woman at the desk took his insurance information and id and handed me a clipboard with some forms on it. She said he needed to fill all that out and give it back to her and asked if he had an x-ray with him. I told her, “Your office in Winchester was supposed to have had his record and x-ray sent to you in early December. We were originally scheduled to be here January 13th.” She just looked at me funny and told me to just have Thomas fill out that paperwork. Whatever.
We sat down, and I started filling out the paperwork. That’s when the problems started. The woman asked through the window if Thomas was over eighteen, which he is, and she said he needed to fill the paperwork out himself. I said, “He isn’t able to.” The Xanax aside, medical paperwork is something he just can’t do on his own. I handed him the clipboard and showed him where to sign everything and said, “Just sign everything, and I’ll fill everything out myself.” The woman still glared at us. Whatever.
That’s part of the problem. Everybody says, “But Thomas is twenty years old. Why can’t he do [insert something here] for himself?” Because he can’t. He’s mildly mentally retarded. He has an IQ of 72 and his base behavioral age registers around eleven. (In fact, his therapist last week said she knew I got tired of dealing with a nine year old all the time) I tell people that, then they go blank in the face and say, “But he looks so normal.”
I finish up the paperwork, hand it back through, she hands me his id and insurance cards back and a few minutes later he goes back to have his x-ray done. Half an hour later, we go back to have the actual surgery done. Thomas could hardly walk at this point. That Xanax really did a number on him. He went to get into the chair and said, “Oh, look. A squirrel.” And started laughing so hard I had to get him into the chair. I can give them this – the view out of the huge floor to ceiling windows was pretty (trees, vines, bushes; plenty of flora and happy, abundant fauna).
The nurse or aide or whatever they are at an oral surgeon’s office started going over his medical history. I asked again, “Don’t you have his record? It was supposed to have been faxed to you in December from your Winchester office.” No, they didn’t have it. She had to go request it. So we’re sitting there and we’re waiting and we’re watching the squirrels do squirrel things in the trees outside the office. So she comes back and we talk about all this stuff about his kidney failure, his transplant, and all the medications he’s on and so on and so forth.
And while we’re doing this, the surgeon comes in and he says that this morning we’re going to do a consult. And I said, “No, this morning, we’re here to have his wisdom teeth extracted. We had the consult in Winchester back in December. I was told that today we would be having his teeth pulled.”
This is when the fun started. I wish I’d turned on the record function of my phone – but being a good girl, I had turned my phone off when we went into the patient area of the office.
The surgeon said, “Now wait a minute. I’m here to do a consultation–”
I said, “All of that information should be in his record. We’ve gone through all of this already. We’re here to have his teeth pulled.”
And that’s when he started yelling at us. And honestly I can’t right tell you exactly what he said outside of that he was doing a consultation before any teeth came out of Thomas’ head. And he said something about me disregarding Thomas’ overall health over wanting to have his teeth pulled. Then he started talking to us like we didn’t have any sense in our heads.
Now, the first way to piss me off is to tell me I’m wrong about something I know I’m right about. The second way to piss me off is to start yelling at me about it. The third way is to start talking to me like I’m three.
By this time I was ready to cry and was shaking so hard my teeth felt like they were rattling in my head. I said, “Look, we’ve been trying to have this done since September. We tried to have this done in October with another surgeon his family dentist sent us to. But we were turned away at the desk because that office doesn’t take Medicare or Medicaid.” Which, in my opinion, the family dentist should have checked in September when her office made the appointment in the first place.
Then the surgeon went off on a tirade about Medicare and Medicaid, about how they don’t pay and when they do pay they don’t want to pay the whole bill, and on and on and on. By then I was paying attention to only the squirrels. But I did hear him say that that office and maybe one other were the only oral surgeons in Lexington who take Medicare and Medicaid. Gods forbid.
Well then we finally got back around to discussing Thomas’ medications, and I said, “Well, that’s part of the reason we weren’t in here in January like we were schedule to be and why I had to reschedule the appointment so many times.” I don’t think anybody even heard me or even cared.
They just wanted to get the names and doses of his medications down.
[[addendum added **]] Then they got down to the part where he takes Prednisone. Before I could say anything but, “Prednisone,” they were all like, “Oh my god, how much and how often?!”
I feel like the damned Prednisone is all they cared about. What about the anti-rejection / immuno-suppressant drugs and high blood pressure medication? And everything else, come to that …
So I told them. “5mg every other day.”
And they tried to argue with me and Thomas both. “Prednisone doesn’t come in that size of pill.”
“We split it in half.”
“But it doesn’t come in that dosage.”
“Look, we take a 10mg pill and split it in half, and he takes it every other day.”
“Okay. We just had to know because we give the patients a certain steroidal dosage with their IV.”
“Which steroid and how much?”
They wouldn’t tell me.
And the surgeon left the room.
While he was gone, the nurse or whatever said that she could schedule us to see someone else but that it would be late this afternoon or Wednesday morning. I told her we couldn’t wait until Wednesday morning. I tried to explain how we had to swap out Thomas’ medications and what we had to go through to get there this morning. Again, nobody wanted to listen to me. I told them,”The copay on the Xanax was high, and we weren’t paying it again,” and after what it had done to Thomas, I wasn’t putting it back into his body again. I can’t remember how much the one Xanax was, but it was ridiculous – although not as ridiculous as the copay on the generic Prograf. And again I told them, “We had to jump through hoops to get his medications swapped around just so he could have this done. He can’t stay on the medication he’s on now forever. It’s just temporary so his gums will heal.” Again, nobody wanted to listen to me.
So I asked Thomas what he wanted to do, and of course he just wanted to go ahead and get it over and done with. And I can’t say that I blame him. That’s what I would have wanted too.
The surgeon came back in, and he started talking about aftercare and the medications he was going to put Thomas on, and he asked me what pain medications he was allowed to have. I said, “Prescription, I have no idea. You’d have to talk to his neprhology team. I do know that the only over the counter meds he’s allowed to take are Tylenol–”
“Okay. He should be okay on Lortab and Penicillin.”
Thomas and I just looked at each other. He should be okay. Right. I made a mental note to call Cincinnati when I got back out into the lobby.
I asked Thomas again if he was sure this was what he wanted to do, and he did, so they got him prepped and ready to go. I kissed him on the top of his head, told him I loved him, and went out to the lobby armed with a package of extra gauze, an instruction sheet for aftercare, and a card with his follow-up appointment information for the seventeenth.
So I went outside and called Preston and talked to him because I needed to talk to somebody before I blew up and took the block with me. And I sent a few tersely worded text messages out to Twitter. Back in the lobby, I sat down and got out my copy of Fight Club to read while I waited. Given my mood, my choice of literature was funny-appropriate. I sent and received a handful of text messages and read a bit. Then I rememberd I needed to call Cincinnati and talk to them about Thomas’ aftercare medications. Gabriella, bless her heart for dealing with this whole oral surgery mess since the beginning of January, patched me straight through to Julie, and we discussed the medicine issue, and she told me what he could and couldn’t have. She said the biggest thing was that he couldn’t have anything related to aspirin / ibuprofen and such. Okay. Now I know. I can remember that because I can’t have those things because ibuprofen constricts my bronchial tubes shut and suffocates me to death. Duly noted.
While I was talking to Julie, the nurse / aide / whatever came out armed with a slip of paper and Thomas’ prescriptions. When I got off the phone, she said, “He wasn’t concerned about the Lortab because it’s metabolized in the liver.”
I just stared at her. I didn’t care where it was metabolized. Well, I do. But I was just as concerned about drug interaction. That and I’d wanted to know what antibiotic Thomas had been on when he had the transplant. Penicillin.
A few minutes later, Thomas came out, and I got him to the car, and we drove to Kroger. He swore he could go in with me, so he did. I dropped off his prescriptions, picked up some Popsicles and sherbet, grabbed a carton of Sprite, and we came home. I got him into bed and comfortable, called Kathy and told her what had happened and how he was doing, and ran back down to Kroger to pick up his prescriptions. He got up long enough around one to take the new prescriptions and went back to bed.
And now I’m going to go to bed and try to rest before I have to go pick Preston up at 5:30. I’m so ready for today just to be over. I’m done.