Jon had a good day yesterday. He was able to sleep in and spent a lot of time just hanging out on the couch. We ate the wonderful baked chicken that Jon's sister made for dinner. Aunt Lauren and Uncle Russ stopped by to see how we were doing and visited with us for a little while. After they left, we continued to watch TV and hang out together.
Jon has an appointment today at NIH to get more scans to help the doctors prepare for upcoming decisions. Should be pretty painless--just time consuming! His mom and sister are driving him down. Hopefully they will have a post a little later.
Sorry this post was a little late ;)
[Going to have to do this in a few chunks so it fits!]
ReplyDeleteSorry, the comments are a little late too! Here's the rundown of our Wednesday trip to NIH.
Mom and I got to Jon's in the morning where we played with Fisher (he sits for treats, ha!), cleaned out the refrigerator (a bit), and chopped up some fruit as we waited for Jon to wake up. Once he was up and breakfasted, we piled into Dave's (my fiance) SUV (he switched cars with me so that Jon would be more comfortable and so that we wouldn't have to drive around on Mom's bald tires) and planned out the route we would take to NIH. Jon teased Mom a little because, as awesome as she is, she is NOT good with directions, but she offered to be the navigator anyway.
With a little luck (and a lot of directions from Jon), we made it there safely and with plenty of time to spare. I had totally forgotten about the 6 food clearance in the parking garage until we went to pull in, and Jon got a kick out of Mom and I ducking our heads as we drove under some low beams (we realized how ridiculous this was, by the way, but kept doing it anyway, which made us laugh even more).
Parked safely, we headed to the first floor of NIH to get Jon's MRI done. We waited. And waited. And waited. After a while, one of the nurses let us know that they were having some trouble with their computer system. Even though they could see that Jon's orders had been sent, the orders weren't showing up on their computers, and--of course--they needed them to get Jon started. Anne jokes a lot about the Bad Bruce Luck, and this was one of the times where I felt like she was right. For most of us, having to wait a little longer to get an MRI is an inconvenience; for someone who feels as sick as Jon has been, it's completely exhausting. As he always is, he was polite and didn't complain, but we could tell that he was really struggling. And the MRI itself (once the computer issue was worked out, which it finally was) didn't help. Anne's already mentioned how hard it was for him to hold his breath during the imaging, and it showed. He looked so pale and wiped out as we walked to another waiting area to get his CT scan done.
Jon walked up to the check-in counter dreading the chalky contrast he knew he would have to drink but came back with a bottle of what looked like water. He grinned as he drank his first of three cupfulls. A little perked up by this pleasant surprise, some of his energy and color returned as we waited again. I could tell Jon felt a little better because he started to talk about food. (Just in case anyone's inclined to make him food, aside from miso soup some of his other favorites are Maryland crab and French onion :) Eventually, he was called back for his CT scan. While we waited for him, Mom and I talked about TV shows and movies and read some of the magazines in the waiting area. My favorites were PetMD, which told me how to communicate with cats (I tried it with Fisher later; didn't work) and Teen Vogue, which warned me of the dangers of sexting. Mom was partial to the royal wedding issue of Entertainment Weekly. At some point, we realized that Jon would probably be finished just in time for rush hour and were in the middle of working out a route home when Jon came back out. He was hungry, and we were in no hurry to rush in to rush hour, so we grabbed some food in the NIH cafeteria before heading back out to the parking garage and onto the road.
Despite the end of rush hour, traffic wasn't too bad, and we were back at Jon and Anne's a little after 7:00. Mom and I said hi to Anne, gave Fisher some attention (Mom hugged him while I tried blinking at him slowly to tell him I felt affection for him but he apparently did not return the feeling), and headed out. It had been a very long day for Jon.
It had been a long day for Mom and I too, but we both agreed that we'd also enjoyed it a bit. On one hand, it was awful to watch Jon feeling so crappy and not be able to do anything. Throughout the day, I found myself thinking that I wanted to design a hospital with waiting rooms that sick people might actually be comfortable waiting in and that it's kind of a shame that people don't have batteries that we could just switch out whenever our energy started to run low. I would have gladly popped one of my batteries out for Jon. So much about this makes me feel helpless--and I HATE that. There's almost nothing I wouldn't do to fix the things that are wrong with Jon--or at least make him feel better for a day, an hour even. My current powers, though, are limited to baking chicken and driving in rush hour. I wish I could do something bigger :( So, on that hand, the day stunk. There were moments, however, when Jon would smile or laugh (usually at something dumb Mom or I said or did) where he'd seem so much like himself that my heart would soar. And it happened more than I expected it to. As selfish as it sounds, I loved the fact that I got to spend the day with Jon--to talk with him, laugh with him, and occasionally annoy the crap out of him by asking if he was hungry, tired, cold, hot, uncomfortable, etc. For me, a small-yet-significant silver lining of this God-awful cloud is that we're getting to spend a little more time with the people we love than we normally would. A day with Jon, even at the hospital and even when he feels like crap, is a day I'll jump at the chance for. I know Mom would agree.
ReplyDeleteSo, our trip to NIH on Wednesday wasn't one that yielded a lot of information (at least not right away), but it was definitely worthwhile--both in the information it gave the doctors that will hopefully have Jon feeling better and stronger and also in the smiles, laughs, and even frustrations we shared with each other.