Monday, March 23, 2015

What We Did Wrong Our First Visit with Dr Li

A Red Eye Flight

In an effort to save money, I booked a red eye from southern California to New York. We had a history of taking red eyes and James has always slept through them. What I didn't factor in was his size. As a small child, he could easily cuddle up in the airplane seat and sleep. As  a young man my height, airline seats are no longer cuddle-able. We were all awake the entire flight, landed at 6 am, and not able to check in until the afternoon,

About that hotel ...

We took the train and then subway into the city. Our plan was to drop off our bags and then do some sightseeing. Only, our hotel appeared not to exist. We had booked through JetBlue (flight and hotel) and we could not find the hotel address. We asked on the street by the name and got directed many blocks in the wrong direction, returned, asked again, and got some helpful suggestions, but no one had any real idea. Finally, the mailman delivered and we showed him the address. No such address.

So, Darren got on the phone with JetBlue and we decided to walk to NintendoWorld so at least we could get off the street for a while. After a couple hours on the phone (literally), they directed us back to the same spot, based on photos on their website. Let it be said, there was a lot of back and forth. JetBlue contracts out to outside companies for their hotel packages. They got a hold of someone at the "hotel" and it was more or less a (nasty looking) Air BNB. And, we would need to take a taxi to get the keys. I found another hotel through and JetBlue refunded us our money plus a $25 ticket voucher each. We came out ahead except for the entire day spent deal with the issue.

James was amazingly behaved throughout. 

So the morning of our appointment

We were all exhausted and not the slightest bit relaxed. All we could really do is be passive receivers of information. Instead of focusing on the information at hand, we were focusing on holding it together, making sure James was holding it together, and if we were ever going to get some down time to enjoy ourselves.

I hadn't written down questions I had (something I usually do when visiting doctors) because I had been waiting to see Dr.Li for months. I assumed I would have them on instant recall when I saw her. Instead, I did my best to keep up.

A few things we did right

I spent a lot of time before visiting preparing James's test results and a medical history. I didn't have to remember what age he was when he had various reactions or tests because it was all written down. Bullet points worked well for me, organized by year, but James is 12 and so the amount of information to be condensed needs to be presented differently than maybe a 2 year old. 

We came prepared to wait in the waiting room. Because I was so tired, I lost track of time, both how long we waited and how long our appointment was. My husband said our appointment was about 90 minutes. I know we waited for some time in the waiting room. We brought stuff to do. Because James is older and because I knew people would becoming who had various allergies, we didn't eat anything. This might be harder with younger kids.

Lastly, we had an open mind. Dr. Li wanted to do acupuncture on James, which none of us were expecting. He was not interested,but was willing to let her put in one needle if she agreed to stop if he asked. He ended up being fine, except that it was hard to sit still.

Why our mistakes didn't matter

We have a monthly phone consult with Dr. Li. I am, still, always jotting down notes of questions to ask, but I have a chance to clarify things once an month. And there are rarely things that can't wait until that appointment. In those cases, I can e-mail and get a response quickly.

The Best Take Away

We hadn't traveled much since James was diagnosed, and then mostly to see my (amazing) family, who always did tons of prep before we came, or to camp. Traveling and staying in a hotel was empowering. I cooked full breakfasts and dinners on a hot plate, with no overhead fan, without setting off the fire alarm and causing the entire hotel to be evacuated. We flew, took trains, subways, and walked through a city where roasted nuts appeared to be on every corner (places still do this?!) and had no issues. Traveling was different, but it was possible. And next time, maybe we'll have fun.

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