I'm exhausted. Physically. Emotionally. Mentally. We are on Day 2 in Boston, and we are finally just hanging out in the hotel room. It feels fantastic. Yesterday we woke up at 4am to get to the airport and travel here for Buster's MRI and appointment with his neurosurgeon. Yes, we could have done his brain scans locally, but I detailed why we decided to make this trip in my previous post, here. I'm recapping our trip's first day below and will continue to write while we are here.
Day 1:
Buster could not have been more excited to get on a plane and head to Boston! Even though he knows these visits involve some kind of discomfort (ranging from annoyingly long "talking" visits with specialists to high-risk, painful procedures), he loves this annual trip because he knows it means special time with B and me. And we love it too. It's always a nerve-wracking experience in so, so many ways, but it is also a highlight of my year because I get to see Buster's joyful face as we walk by Fenway Park (one of my favorite places from childhood), when we go to the Children's Museum, the Aquarium, or even to Yard House for grilled cheese. Boston is my favorite city in the world and it is not beyond me that Buster's life saving surgery happened here, where I feel like I've come full circle.
Buster did not stop talking, from the time he woke up to the time he went to bed. At 11pm! He was so excited to get on an airplane, and had packed his suitcase "himself," which means I double checked it---thank goodness, because 8 pairs of underwear, 4 pairs of pajamas, and 5 pairs of shorts probably would have meant we couldn't leave our hotel room the entire trip ;) After lots of tears when I wouldn't let him pack alllllll of his stuffed animals, we had a successful suitcase packing. Yikes.
Our flight was uneventful, but for a kiddo beyond elated at the thought of flying, he was bored pretty quickly. He watched the flight tracker on his screen almost the whole time. Who would have thought? As soon as we landed, we checked into our hotel and had a quick lunch at Yard House. The first year we were in Boston for Buster's surgery, Yard House became his favorite place to eat around here. I think we had 6 meals there the first year! It makes him happy, which makes us happy. Then we raced to get him a Covid test at Boston Children's Hospital (BCH). Negative. Phew! And then...Buster hit a wall. He was beat, from an early morning wake up, the excitement of travel, and the longer walk to the hospital testing site. We relaxed in our hotel room until his MRI, which was late in the evening. When I made the initial appointment, I wasn't thinking about what a long day it was going to be. We were all zombies on our walk back to BCH but we figured it wouldn't be such a long appointment. Boy were we wrong!
Usually, Buster's MRIs are done under anesthesia. Because they are taking scans of his brain, he has to remain incredibly still so they can get accurate images. BCH was the first place Buster managed to have an MRI without anesthesia so they always give us that option. The only other time he managed to do it, the entire scan took about 5 minutes. This scan would take at least 45 minutes and I wasn't sure he would be able to manage it. But we always try! It wouldn't have been a problem if he couldn't get through it without anesthesia, because the BCH radiology staff booked him an appointment for the next morning, with anesthesia, with back up. Having him go under is never fun, so attempting a "try without" is always something we like to do.
If you've never had an MRI before, or seen and MRI machine, the whole experience is amazing but also a little intimidating. The MRI machine is massive, and depending on which body part is being scanned, a person is either lying directly in a narrow, tomb-like tube or only the body part of focus is in the tube. Buster's head and neck were being scanned, so almost his entire body was in the cavern. BCH has decorated their machines with child-friendly murals, but really, they look scary simply due to their size. I can only image Buster's thoughts as we entered the room. The room is frigid, with lots of machines buzzing, and the lights low. An MRI image is formed using magnets, which means absolutely no metal may even be in the room with the machine. The magnet is so strong it can pull piercings out of the body, and any metal threads in clothing can heat up as well. Buster and I had to change into scrubs to ensure we were metal-free. They had us stand on a metal detector, too, to double check right before we entered the imaging room.
As soon as we entered the scanning room, Buster got nervous. He asked me to take him to the bathroom, which I did. I almost didn't get him back out of there. He started to cry and said he needed a break, and that he didn't want to go through with it. My mother was pretty tough on me growing up, when I would shy away from something due to nerves and I'm glad she was. She definitely taught me how to toughen up a bit. I wasn't always successful at pulling myself up by my bootstraps, as they say, but I still appreciate that she didn't give in to me when I asked her to. I've learned as a mother that much of what is good for your child is hard for you to put them through. Do I like that Buster has these tests? Absolutely not. But they are, without a doubt, necessary. I crouched down with him in the bathroom, looked him in the eye, and said, "You are brave." I carried him back out and into the imaging room, as he trembled in my arms.
The staff at BCH is the best of the best. I don't know what it is about the place, but every single person we have come in contact with has been out of this world. The MRI imaging staff was stellar. They spoke to Buster like he was in charge of his own body, they validated his nerves, and walked him through every step of the imaging process before starting. Buster was laid down on a hard, cold table and his head was placed in a helmet of sorts. The MRI tech told him it was a "hockey helmet" which seemed to calm Buster's nerves a little. But let me tell you, as I have had a brain MRI myself, it is frightening from the inside. I felt as though I was in a small cage, and I really, really didn't like it. Buster had the helmet and face mask over his head, and headphones over his ears so he could watch Bella and the Bulldogs on Netflix while they scanned his head. MRIs are...LOUD. Very, very, very loud. Buster was able to be distracted by the show he watched, but the sound from the show and the headphones also protected his hearing. I was given earplugs, because I stayed in the room with him. I have actually gone into the tube with Buster before, but he has grown and there was no room for me this time, so I stayed just outside and held onto his foot so he would know I was there. I was initially disappointed I couldn't lie with him, but then immediately grateful for this change of plans because being in the tube with him means a 45 minute long plank, and that is ridiculous.
They started the scans, and the loud beeps, screeches and scratching scared Buster at first, but by the third image sequence, he relaxed a little. The entire scanning process took about 40 minutes, but they had to retake the last image because Buster started to move. I can't blame him, after lying still for so long! We finished up and they gave him a Matchbox car for doing so well. We changed out of our scrubs and walked to the waiting room, starving for a late dinner. As we turned to walk out, the MRI tech caught us and told us that the radiologist wanted one more image. Again, if you haven't had an MRI or had a child with an MRI, you might not know, but this can be a very bad sign. It can mean that the radiologist sees something irregular on the scans that he or she wants a closer look at, or it can mean that they need more detail on a specific area. Either way, my heart sank. But we had to do it. Buster was not happy, as he had felt so relieved to be done with the difficult part of the day. The tech told us it would take only 10 minutes, but of course, it ended up being more like 45 minutes. But Buster rocked it! The MRI tech felt so badly that he called us back that he gifted Buster a whole Lego set! That is the way to Buster's heart, and he was thrilled!
By the time we were all finished, it was 9pm. B, Buster and I were spent. We walked back to our hotel and grabbed Chipotle for a super late dinner. B and I cracked open a beer, too, because, well, it was a rough day. Buster stayed up until 11pm, building his Lego set. And on these trips, we let him do most things he wants. He deserved his fun after a long day. The hard part was done for him, but our hard part was just beginning: the wait for the MRI results and our appointment with the neurosurgeon the following day. It was easy to avoid the nerves leading up to our trip, but now we were in the thick of it, and the anxiety was starting to really ramp up.
Buster's MRI results and our Boston Trip Day 2 will be in my next post!
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