It was transfer day! We were extremely nervous, but so excited to get to Boston and finally have a plan of action in place to get Teddy’s EA repaired. Teddy was still requiring oxygen, but overall was doing great. He was still growing slowly, and his little personality was blossoming every day. While we were very ready to get to Boston, we were so sad to be leaving the safety of our local hospital. The TICU had not been the best experience for us, but our time in the NICU had been amazing. They all saved his life multiple times and had become our family. It was going to be so hard to not be able to see them every day. As we waited for the air transport team to arrive, I started getting more and more nervous. We knew Boston were experts in all of Teddy’s challenges, but we also knew it was going to be a very long and hard process that wasn’t guaranteed to be 100% smooth or successful. This would end up a legitimate worry for us but being in Boston turned out to be Teddy’s literal saving grace.
Since only one of us could fly on the airplane with Teddy, Jason swung by the hospital in the morning to say goodbye and jumped in our jam-packed car and started driving to Boston. It was a 15-hour drive, on a good day, and he was planning to drive straight through to get there. Since we had no idea how long we would be there and knew we would need to stay in the area for a little while once Teddy was repaired, we literally packed everything we could think of we might need for a newborn. We managed to book a room at a Bed and Breakfast that offered discounts to hospital families and got on the list to get a room in family housing. Both places were only going to be a small room with a shared bathroom, so most of our stuff would have to stay in the car while we were there, and we would just figure it out as we went.
When the air transport team arrived, everyone got busy getting everything ready. We met the amazing flight team and they instantly fell in love with Teddy. I could take a few small things with me on the plane, so I had an overnight bag and Teddy’s emergency medical bag I had created when we took him home. I wasn’t sure why I decided to bring it, because we literally were on a medical airplane, but something told me to bring it and as it turned out, it would be a good thing I did. Teddy got VERY cozy and strapped into the stretcher, which would be his bed for the next 5-6 hours. Our favorite NICU doctor came to see us off, so we got a few quick hugs in and said our goodbyes. Once Teddy and I were loaded into the ambulance, we headed to the airport. The nerves really kicked in when we pulled up next to the plane. Teddy was doing great, but we were about to take a 3-hour flight with a child that required constant suctioning. In that moment I was so glad the insurance finally approved the medical flight, so we would not have had to manage flying on our own.
Teddy seemed so amazed by what was going on around him. Until that moment the only things he had seen were the 4 walls of a hospital room or the brief drives in the car directly to our house for a few days. He had never really been outside and now here he was on a tarmac about to go on his first flight at 2 months old! We all loaded onto the plane and took off. Teddy was wide eyed pretty much the entire flight and did so well! I unfortunately was not able to sit next to Teddy, as the nurses had to sit there, but I did pretty much stay rotated in my seat to keep a close eye on him and of course take pictures. The nurses did snap one picture for me of Teddy looking out the window with amazement.
Teddy did so well the entire flight. He dozed off once or twice, but for the most part he was wide awake the entire time, perfectly content. From my seat, I was directing the nurses on what to do if something was making a weird noise or didn’t seem right, because like others we had met, they had never experienced a child with EA. When it came time to feed Teddy, they realized that they did not bring his feeding pump, so thankfully I had brought the emergency bag with me (always trust your mom gut) and had a gravity feeding bag that we could use to feed him. The flight was very smooth and 3 hours later we were landing in Boston. It was dark by the time we landed and cold and rainy. We loaded into the ambulance and headed to Boston Children’s Hospital for the first time.
They took us in through the emergency room and as soon as we walked in, I was instantly amazed. It was so big and bustling. We made our way through the ER and headed up to the Esophageal and Airway floor. Yep, that is right, we were headed to the floor, not an ICU but a floor of ONLY Esophageal and Airway patients!!! I couldn’t believe it. They wheeled us into his room and as soon as everyone started getting to work, I immediately felt relief. Everyone had extensive experience with EA kids. We were definitely in the right place and had made the right decision. I will say all the nurses were not quite prepared for a parent like me, because I wanted to do everything and knew how to do everything. Boston does not allow their EA kids to go home unrepaired, so they had rarely dealt with parents who had managed all of it themselves. It was a bit of a power struggle at first, but they finally realized that I wasn’t going to give in and let me do whatever I wanted to do.
Teddy of course immediately made everyone smitten and they started fighting over who would be his primary nurse. He was all smiles, coos, and was really pouring on the charm. I feel like within the first hour of us being in the room, half the floor nurses had come by to see him. Dr. Jennings, along with a few of the other doctors, did come in for a quick meeting and check-up of Teddy that first night. I gave them a quick rundown of all things Teddy. Even in that first 10-minute meeting, Dr. Jennings diagnosed Teddy with a few things we didn’t know and clarified a few other things, and I was blown away and so thankful we were in Boston. It wasn’t until the next day that the ball would really get rolling on getting the clearest picture possible on all of Teddy’s differences and challenges and I can say that our eyes were definitely opened.
But for that first night, Teddy and I settled into our room and started learning the ins and outs of a new hospital. It was a shared room, which wasn’t ideal, but we were able to make it our own space and I had a “bed” to sleep on. Jason arrived the following morning and we were both excited and relieved to see him! After Jason arrived, I finally ventured out of the room and realized just how amazing Boston Children’s Hospital is and began to feel some of my anxiety and stress ease, at least for a little while…..
