But uggg nature! I parked and was immediately met by a swarm of insects that swarmed all over my car and bunch flew inside when I opened the doors. I'm not sure what they were. I was worried they were small mosquitoes. I squished and shooed a bunch of them back out when we left. I took Phoebe out and the first bird that we met was a Canada Goose that wanted to come right up to us. This sounds cute, but if you know, geese can actually be very aggressive and can even bite your finger off, I'm not even kidding! I swear, this bird was bigger than Phoebe. Anyway, we avoided the goose, but it decided to keep following us, at a distance, as we were intruding on its territory. Phoebe wanted to go up to it, but I told her no, because that bird might not be nice. Phoebe liked saying "NO! NO!" to the goose after that. We went and found some other duckies by the shore. They were still sleeping. Phoebe wanted them to wake up, so she said "UP!" Then we went on a little path and saw a lizard and a little brown bird warbling beautifully. After consulting with Alison, I believe it was a song sparrow.
Quack Quack, waving to sleepy ducks!
Anyway, it was nice to have a little outdoorsy break before the long day, despite bugs and threatening geese.
We got checked in and then did our first part of waiting around. Then we got taken to a room by one of the same nice nurses we saw last time. She remember us too, I don't think they get too many toddlers coming through. I mentioned we had stopped drops on Sunday and that I had tried to message Dr. N with a question about it and not heard back; apparently I need to join a different Stanford online health network for emails to actually get sent to him, so that explains why I got no response. They started setting me up with that. We then went over Phoebe's meds and I did the dilating drops for Phoebe.
Then we waited some more. Every where we went, people were just falling in love with Phoebe. I'm sure it was a great distraction for them to watch an adorable toddler.
Phoebe got called in to take some photos of her eye. She struggled with this last time, so this time they tried a different camera on her. Phoebe did great. The lab woman was really fun too, with braided pink hair and singing Elmo's world (perfect choice for our girl). She ended up taking the cover off part of the camera and inside was a big big mirror. I had to hold Phoebe's arms so she would NOT touch it at all, and she did great and took good photos of both eyes.
After that we went back our, it was around noon-ish. Dr. N's 9:00 patient was still waiting around to be seen, but he was taken pretty soon after that. We had the "9:30" appointment.
I had packed a few snacks in the back pack, but in the morning rush, I had forgotten Phoebe's lunch. I know I went the fridge, because I did pack her water bottle, but I did not actually grab her food. So I went downstairs and got a bunch of stuff at the little cafe and it held us over quite nicely. They even had milk and goldfish cracker bags. Win!
When we went upstairs I got to hang out with a 2 EMTs, who had brought a patient, and then were instructed to wait around for them. One was a dad with a 16 month old, so we talked kids and what medications Phoebe was taking.
Oh, another way we passed the time was going potty. Phoebe stayed dry almost all day and used the potty 3 times while we were there. The only time she peed herself, she started asking to go potty and then actually peed more. What is happening?!
Finally Phoebe got taken to the room for her exam! But of course you get to wait in there for a while too. Another doctor was waiting around in the hall, looking out the window. Phoebe kept trying to play with the door, opening and closing it, and attracted his attention. He started playing peekaboo with her and then started to chat with us. He got super fascinated when he realized that Phoebe was going to be the patient, not me, and actually came into the room and sat down to start talking to me. He was amazed when I said she had uveitis and also JIA. He said he knew young people could get arthritis but had never imagined a 1 year old. He said he treats people in India all the time with uveitis but had never met a toddler with it. He wanted to know all about how her uveitis got diagnosed, since it has no symptoms. For him, it is not usually caught until it has progressed a lot and usually there is redness and flare.
So I went over our whole story of Phoebe's struggles to walk and he wanted to know all about all her medicines and what was working etc. He was really interested in how she handled the infusion and how the heck do they place the IV in someone so little. He was also definitely of the do-not-treat-with-steroids camp, which I guess is the most cutting edge research, as most ophthalmologists will still keep you on steroid drops, or even just one steroid drop a day, but it's really not necessary and of course, steroids are very dangerous over long term use.
Anyway, I was a little baffled that this doctor was taking so much time to basically hang out with us. But I guess he was actually waiting to observe Dr. N. There were some residents hanging around last time we came, but I do not think he was a resident. Eventually I got a look at his badge and it said "Visiting Lecturer." So I guess he is a doctor visiting and observing at Stanford but practices in India. He was SO. NICE. and cute too (ahem....love you, Jason! lol). But most of all, he was just so good with Phoebe, so playful and caring, she let him push her around in her stroller and even pick her up several times. I loved how affectionate he was being with her. I wish more than anything that he could be her doctor! Arg!!
And he was so enchanted with Phoebe, before we left he wanted to take a picture with her, to show to his 4 year old daughter, who is in India. I thought he would kneel down next to her as she was sitting in her stroller, but nope, he picked her up again. He totally melted my mommy-heart. I told him I liked thinking of his daughter in India seeing a picture of my little Jewish-Japanese baby. It just feels so incredibly global!! The saddest part is that I don't even know his name-- I'm sorry it was hard to read embroidered on his lab coat and had too many letters to sound out and remember.
Dr. N continues to not be my fav person. Jason's mom thinks I shouldn't see him and that he doesn't show enough care/concern for Phoebe, and it's true, he's really hard for me to talk to. She also does not like that he makes a little baby like Phoebe wait for hours and hours and hours, when you are supposed to have a 9:30 am appointment. As it was we got seen after 1 pm. The waiting isn't actually too bad for us, it's just long. And, yes, Phoebe is little, but who am I to say that her case is more important than that of the elderly man who was waiting to be seen before us?
I am still conflicted between how much do I actually have to LIKE a doctor vs. how much do I need them to know their shit. I certainly do not doubt that Dr. N knows his shit. Also, he has pretty stellar reviews online, which doesn't change my own personal experiences of interacting with them, but it is still pretty impressive and does give me some perspective. One writes:
You can go anywhere to see an eye physician and surgeon ( a true doctor who specializes in eye diseases - an ophthalmologist, and not an optometrist). You may even have to wait for just 5 minutes or less. However, if you truly wish to learn why you have a serious eye disease, especially if the disease involves the retina or if it is uveitis, you need to come to see Dr. N. I must warn you though that you may need to wait a while to be able to get an appointment to see Dr. N, as people from many states in the US and around the world come to see Dr. N. Dr. N is extremely smart - just read his CV on the web. He will spend hours with you if necessary, hence you may spend several hours when you come to see him in his clinics. When Dr. N is with you, that is all he focuses - all on you, regardless if there are others waiting. Thus, please be patient when you come to see him. After your encounter with him, you will see why and how he has garnered his reputaion. The patients that he sees often have very serious illnesses, not just with their eyes, but with their bodies also. And, Dr. N always tries to help them all.I have been with many physicians. However, very few have the intelligence, the devotion, and the compassion like Dr. N. He is truly incredible!
So, that is definitely some glowing praise and I do find his attention more admirable than upsetting. But he is definitely very particular and demanding and it's not just the language/cultural barrier. He doesn't like that Phoebe is his patient, but then we didn't follow his treatment recommendations. Though I can also understand that as frustrating. We discussed again Remicade vs. Humira. He is still concerned about Remicade side effects and being less effective. He says that he goes by the facts and the research says that Humira is superior and safer. He said that Remicade was not proven, but it may still work, so yes, it's fine we are trying it. I remember Dr. B saying that the study that was done on Remicade was not well conducted, and that she said it still was an effective treatment. He didn't think that was a good reason because if it was effective, the literature of the findings would show that, and he has to go by the facts. I said that if Remicade fails, we are not ruling out Humira, but that I took it seriously that using this drug was a traumatic experience for many children. He said he does prescribe it other children as well. I decided not to get into it that the citrate-free, less painful pediatric formula of Humira has just been released; he probably doesn't even know yet.
He also kind of questioned me on still seeing Dr. C, because seeing 2 doctors with different opinions is confusing, and it's true, it kind of is. I am thinking about dropping him and just sticking with Dr. C because I prefer her but...... then I do have to recognize his expertise. The photos of Phoebe's eyes show that her right eye has inflammation of her optic nerve. I could definitely see some sort of spot on her photo. Phoebe totally ROCKED her eye exam when he finally got around to looking at her. Our practicing at home with a box paid off. So, she still has no cells in her eyes YAY, but this inflammation is a concern because if it does not resolve, that is what would cause vision damage. Dr. C definitely doesn't have the capabilities to see that in her office. :(
So he is still planning to do another fluorescein angiography in September, 6 months after her last exam with anesthesia. So hopefully being several months into Remicade by then will make all the difference, otherwise we will need to talk other options.
It's so hard, and I'm just undecided. There's another specialist through UCSF we could potentially see, if I want to seek her out. But Dr. N has already done some pretty through exams of my kid's eyes... is it better to just keep building on that or start over with someone new? And I am sure that if I go to someone else Dr. N is the type of doctor who would be suuuuper insulted, just like I read in the reviews of the orthopedic who originally diagnosed Phoebe. What the heck is up with specialists. Someone Jason works with who has some health issues agreed, most specialists are just arrogant assholes.
Anyway, we finally left at around 2:30.
We went back via Oakland this time, so we had to make a surprise visit to say "BOO!" to Dada.
With this added stop, I got in to pick up Cordelia at 5:30! Oof long day, long drives. My song obsession of the drive was "Starlight" by Muse.
Not for any particularly inspirational reasons, it just made for really good driving. Ha ha, I was reminiscing about how on LiveJournal you used to always be able to record what music you were listening to when you were writing. I made a silly facebook post about what if we could re-read old Livejournal posts the way we can look back through our old Facebook memories. This suggestion elicited several horrified responses from friends.... they must have been even more emo than me. 😂 But I guess I've always liked keeping a diary. It helps me remember my days and process stuff. Thanks for reading, if you're reading along! :)
No comments:
Post a Comment