We drove down last Thursday night. It had been a stressful couple of days around here. A large tree fell in the backyard of one rental property, and on Wednesday night a plumbing problem developed at the other one. I had to jump up on Thursday morning and find a plumber willing to crawl into a tight crawl space to fix a busted pipe while Rob and Ashby were taking a chainsaw to the tree. Thanks to Kelleher, I got the plumbing issue resolved and got home in time to get Ian off the bus and we got on the road.
Need to give a shout out here to our hosts in Chapel Hill! My sister Mary and brother-in-law, Jim, have been putting us up for the appointments. Although the study would provide a hotel room, it is so much easier to stay with family. Mary has been spoiling me with wonderful dinners and delicious cocktails upon our arrival, which is usually around 6. Ian loves chasing the cats around and watching them come and go through the various cat doors. He feels comfortable in the house and always sleeps well.
 |
| Comfy and cozy at Mary and Jim's |
The next morning we had to get up and going early because our appointment was at 8:30. It all went pretty smoothly until I couldn't find my car keys, prompting a little bit of panic on my part. But, they turned up and we got into the garage at Duke by about 8:25. As we came in, the attendant gave me a ticket with a big smile and asked if we were going to the clinic. When I said yes, he said he hoped it went well and that we had a great day. That was such a nice way to start our visit, especially since Ian had decided that he had to go to the bathroom RIGHT NOW when we were about halfway there. (Never mind that he wouldn't go before we left Mary's house.) We found a decent parking spot and ran to the clinic and a bathroom. Hurray! No accident!
Min (or Ming, not exactly sure) was our nurse and she was wonderful. She took us to our "usual" room to wait for Wan. Her son was born the same week as Ian, and we had a good conversation about 5th grade and middle school.
When Wan came, we went over our medication logs from the packets. She made me feel so good because she praised me on how well I did keeping records. I know that means so much to these research people, so I did make a real effort to be meticulous and try to dose Ian at about the same time every day.
I had a few minutes to check email while they were doing some things, and I found one from Ian's teacher. I had asked for her feedback so I could share it with the team at Duke. She wrote a very positive email, and when I read it to Wan she started to cry! She was so happy, then I started to cry. She excused herself and went and got Min and another nurse, Kimberly, and told them the whole story about getting Ian into the study at the last minute and the positive changes that were happening. It was such an amazing moment, I'll never forget it. Ever.
Back to the more basic stuff. We had dosed Ian after arriving, around 9:20. Then they checked his vital signs. After that we had to wait two hours to do the blood draw. We had some time to go get breakfast in the Food Court. We brought the iPad and Kindle and Ian patiently sat at a table while I got coffee and some breakfast for me at Seattle's Best. The women working that counter were so nice, just above and beyond. Even though it was noisy in there, Ian did pretty well.
 |
| Settling in to his spot to watch DVDs |
After that, it was a lot of waiting around. Wan had brought her DVD player again, and Ian alternated between the iPad and the movies. I used the Kindle to keep myself occupied. (Next time I'm taking some knitting or something.) Dr. L came in and checked Ian over; he did much better this time. When it came time for the blood draw, the first thing Stephanie said was, "There is something different going on here." She said he seemed more engaged and had better eye contact. And Ian was a SUPERSTAR for the blood draw. We just sat him on the bed and kept him still and he even WATCHED it this time. He gave a couple little screams after it was over but that was it.
 |
| The view from the room at Duke Clinic |
Our longest wait was after that. It's very complicated with the drug packets. They have to be brought in on an overnight service, then run through the pharmacy. We had to wait over an hour for them after the blood draw, but it was okay. We made arrangements for our next visit, and then we were on our way.
 |
| Ian's binder |
As we headed to the garage, Ian seemed to be walking with a lot more confidence. He knows his way around now, and overall the anxiety level is way down. We got settled in the car and had a nice farewell from another parking attendant on our way out.
 |
| Duke Hospital, part of the huge medical complex |
 |
| Back in Richmond! |
No comments:
Post a Comment