Phoebe was seen at Adult Medicine, even though they also had a children's department. As I filled out paperwork, one form said that new patients should be prepared for their first visit to take up to SIX HOURS, and that in itself was conditional that Dr. N would not get called away to deal with any emergencies. Woah, twice as long as the receptionist on the phone had told me!
We were there about 5 hours.
Most of that time was waiting. I had asked the uveitis facebook group what to expect that they had told me that specialists just take forever, so I was well stocked with snacks, toys, and books. This was especially good because adult medicine had nothing fun it the waiting room. A few parents had children with them, but Phoebe was the only toddler around and she was charming everyone with her cuteness. She was in a great mood all day, what a trooper. The few who asked were all so sad to hear that she was the patient, not me.
Pretending the seat is "monkey bars".... Wheee
Playing in the waiting room!
We saw a nurse who put 3 kinds of drops in Phoebe's eyes to dilate them, not sure what else it was supposed to do. After more waiting we went in a room to take pictures of Phoebe's eyes. She was able to mostly do one photograph, but I think it didn't turn out that great. The other was more to try and get the back of the eye and she was supposed to stick her face forward into this dark box with a concave mirror at the top. I guess there was a little green light inside, but you can't really tell a 1 year old to look for the green light. Phoebe wouldn't put her face far enough in although she tried several times, and they couldn't get any good pictures. That was expected, so it wasn't a problem.
The nurse told me to that Dr. N was most likely going to want to put Phoebe to sleep to examine her eyes thoroughly. She told me they were trying to get an appointment at the hospital on this Thursday. Phoebe will need a retinal fluorescein angiography. A fluorescent dye will be injected into her blood stream. The dye will highlight the blood vessels in the back of the eye so they can be photographed. I am really glad that someone on the FB page mentioned this test so I was not completely mentally overwhelmed, though the thought of her having to be put under for a THIRD time already gives me that terrible sinking feelings. But at the same time.... we're almost getting more used to this (numb to it), so I'm not even that shocked. She's little, she's hard to examine, it makes sense.
At one point, someone came and told me half an hour, but it was probably at least another hour, if not more. Then we got called into the exam room and got to wait in there for another half an hour.
Then we got called to the exam room next door instead. Dr. N was in there, along with the nurse and someone observing, maybe a resident. Dr. N was typing on the computer and didn't stop to talk to us for quite a while. Not the greatest bedside manner overall, but nothing to really complain about if he is going to make Phoebe better. Also he is foreign/not a native English speaker.... not judging, just observing, as I felt it informed his personality. But I did kind of miss that empathy component. He started by questioning me on why I felt she needed a specialist, but then agreed that she was not being treated aggressively enough and that we needed to go straight to a biologic. I said that yes, that was basically what Dr. C had told me on Friday and I was going to discuss it with her rheumatologist on Wednesday. And he was like, "No, *I* am putting her on a biologic." I wasn't like, trying to disagree with him.... basically it sounds like everyone was on the same page, even if Dr. C had told us to keep doing hourly eye drops for the methotrexate's full first six weeks. He said the topical eye drops Lotemax (very low dose) were just like a bandaid and that she needed to be treated systemically. He did not seem to be moving toward stronger steroid eye drops either, as he said those would cause guaranteed side effects.
He said that uveitis was "very treatable" with Humira. (He kept calling Humira "adalimumab" which is it's medical name, but I didn't know it.)
Hm. From what other people are always posting about, uveitis is very tricky and stubborn to treat. I do not feel like it is "very treatable" from my understanding. Though I guess it is good that she is polyarticular vs oligoarticular, which is *more* likely to have uvieitis and then be harder to control.
Also, the way he just flat out said she needed to be on Humira was a little alarming... not surprising.... but still....he didn't bring up any of the scary scary side effects. And the terribleness that this drug is also painful to inject. Based on what he sees at her procedure, he will be deciding if she will do Humira alone OR Humira and mtx together. He said it would not be "ethical" for him to assign it without the "evidence", so I'm grateful for his thoroughness and glad to have him on Phoebe's team.
But I think we might be looking at like 3 shots a week now.
Oh dear, all the things my poor Phoebe is going to have to endure. I guess that is kind of what I mean when I say the empathy part was missing. Unlike Dr. C who made us feel really cared for, even when telling us straight up to do seven weeks of hourly eye drops. I think overall Phoebe does slightly better with female doctors too....
Dr. N was also slightly frustrated that although I knew the dosages of all Phoebe's medicines, but not their pharmaceutical concentrations. Like, I know that I give her 4.5 ml of Naproxen twice a day, but what is its composition? The nurse had written down all Phoebe's medicines when we had dilated her eyes, hours ago, but he corrected her and told her she should have gotten all the information then, because now he was "stuck" and couldn't make more notes. Fortunately, the nurse called Walgreens and they were able to provide all the details. He gave me a notebook to take to all appointments and make sure that I have everything written down. Cool.
Dr. N was not really able to examine Phoebe. It was after 1pm and Phoebe was REALLY TIRED, but she put her chin on the thing to look through the slit-lamp, probably for like the longest I have ever seen her do. I bet Dr. C, with her more pediatric background, would have gotten to see a lot, but he said he couldn't really get a good look at anything. I am hoping he just wasn't trying very hard because he'd already decided to put her to sleep, because that's close to as good as he is going to get for a while! Hopefully he can examine her better on a return visit and isn't going to want to put her to sleep all the time. Yikes!
The good news from all this is we are going to start to wean Phoebe off Lotemax. He said we could go down to 6 times a day for 2 weeks, and then 4 times a day.... unless he decided to change that after he does the procedure. That is good because I'm pretty much out of eye drops because even though they ordered us a lot more, Insurance still refused to pay for it until TODAY.
Then I got sent over to the surgical coordinator. She said she hoped Phoebe would get the appointment on Thursday. Eye doctors have to wait for other physicians to give up their spots and just take whatever is available. If Thursday didn't work out, she told me rescheduling could take weeks/months, though Dr. N did try to get his patients seen asap. Another procedure was happening Thursday and if that was going to use any of the same stuff, we wouldn't be able to do it too. She told me she would know by Wednesday if we would be seen Thursday!
We also needed to get Phoebe a physical from her pediatrician before Thursday so she could be approved for the procedure.
We talked about traffic/getting a hotel and how it was hard to make plans, but that was just how things worked. She said that eye procedures don't usually get done first thing in the morning, which at first sounded like better news for potentially driving, though a hotel is probably safer.... and then I also realized with anesthesia, Phoebe will be fasting. If they tell me her procedure is later in the day, how am I going to distract this girl who says EAT the moment she wakes up. Oh dear! I hope it will be early! They won't tell me until Wednesday afternoon. They said they are supposed to call between 1-4, so hopefully it will not be nearly 5:30 when they give me instructions like last time.
Phoebe was so exhausted, she fell asleep in her stroller while I was talking with the surgical coordinator, which basically never happens. I let her sleep for a little bit because I wanted to change her before driving the long way home.
I got a Wednesday morning physical with Dr. Jen and talked with Jason and my work about being out. This was good because I got a phone call from the coordinator saying Phoebe was approved for Thursday. So all things are GO!
Unless Phoebe gets my cold.
Then we will have to postpone everything and try again later.
Phoebe has sneezed several times, but I keep taking her temperature, and it is normal. Watching her SO CLOSELY. Jason's dad started to reserve us the hotel again, but we decided to just wait until Wednesday because he wouldn't be able to refund his points on a day-of cancelation.
Everything is so up in the air, so chaotic.
But as Jason's mom pointed out, hopefully even with yet another anesthesia procedure, we aren't going to be told anything we haven't heard before, and we will just keep moving into the next phase of treatments.
On the LONG drive home, I listened to "Breathe" by Michelle Branch over and over again. Pete Yorn's "Crystal Village" got me through Phoebe's joint injections..... now it was good to have a reminder to just breathe while we go through this!!
Today I had one final round of shenanigans with Walgreens and the insurance, which I think was slightly called caused by human error. I think the Walgreens pharmacist tried to run our big order or eye drops through with the discount card from before that helped us with the co-pay. Our insurance declined it. I tried to tell him that no, now that we'd hit our deductible, the last couple bottles of eye drops were free for us, but then I started to doubt myself and wondered if they had still been running the discount card and that was what had lowered the price even more and I still had some sort of co-pay. This was not good because they were giving me like $1900 worth of eye drops and I did not want to pay for any of that. 😲
Anyway, I went to text Jason's mom that I was stuck at Walgreens waiting for them to call the insurance and I happened to check my phone for when Phoebe's PT appointment was for today.... and I had mixed up the times. It was starting at 2:15.... in 15 minutes. This is what happens when you trust your memory too much and have appointments every day!
So I left Walgreens without eye drops and rushed to get Phoebe to PT. I called that we were running late and we made it in around 2:30. PHEW. I had thought it was at 2:45, but I was way off.
Walgreen called and said the insurance cleared things up and the 8 bottles of Lotemax were indeed $0. We no longer need that discount card at all, and it had to be taken off for it to go through.
PT was fun, though we still had to be done at 3, so we missed 15 minutes. Oh well. Tiffany thought Phoebe was doing well. I talked to her about Phoebe turning her foot, which I had been noticing a lot over the weekend at the hotel. She said she thought it was probably something Phoebe was doing just to get more mobility.... and in fact Phoebe was not doing it much at the appointment except when she walked on the mats, which are uneven surface. So that was good.
Phoebe loved bouncing on the horsie!
We did Tuesday's shot. Phoebe had our fastest recovery time yet, as we had a Cookie Monster video ready to go on the ipad right after we did it. She loves Cookie Monster. We realized we forgot to do the alcohol wipe again. She'd just had a bath, so hopefully she was pretty clean. It's so hard to remember everything in the moment!
Phoebe still has no fever, but has sneezed several times again. Fingers crossed for tomorrow and Thursday.
I'm ridiculously looking forward to seeing our pediatrician tomorrow morning. I feel like I'm going to see an old friend or something in all this... it feels like so long since she sent me off on this journey and her willingness to text/email/call to stay up to date with me through it all has been such a huge comfort.
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