Thursday was an early morning for us. We had to leave by 5:30 to make it across town via the train to the hospital for Jacob's procedure, which was the first case of the day. We got everyone else ready, and essentially pulled him out of bed in his PJ's and put hi in the stroller and went. He didn't seem to mind, and was just chillaxin in the stroller on the subway! It was so funny, but at the same time, he looked so grown up...
We got checked in and hung out in preop for a bit, talking with anesthesia, and with our doctor one more time. Jake just settled right in and watched a show with his brothers and sister.
It was so neat having them there. Such a good distraction for him, and for David and I as well. There was just a lightness for me this time as compared to before. I'm not sure what it is exactly, but their presence just seems to ease the tension I'm feeling and ease some of the heaviness of those moments of waiting. Maybe its the normalcy of having all 4 together, I'm not sure. But either way, it was so great to have my whole little family there together.
It was a long wait though, they put him under a little before 8 and I left him with the doctors, and they weren't finished til almost 12. It was not as good of a report as we hoped for. The procedure went well, but ended up being much more involved than they hoped and anticipated. Based on the ultrasound they did at our appointment on Friday, the lesions looked very small on his back. That finding led us to believe that similarly it would be small in his chest. And the last treatment in April, there was very little they had to do in his chest, as it all was pretty much sealed from the first treatment in February. But once they got in there, they found that inside his chest, it the lesions redirected and grew new channels. The lesions reinvaded into his pleura (lung lining) like before, though not as large as the first time. This was not expected so soon, and was a tough pill to swallow. This was a sobering reminder of the difficulty in treating Jacob's condition. The doctor essentially gave the maximum dose of sclerosant to close up these new channels, doing quite a bit of work concentrated on the area in his chest. Because of this rapid regrowth, he wants to get some imaging in 2-3 months to look at it and decide if we need to treat in the fall, whereas Friday he expected us to be good for a year or so to wait to get a MRI. But we will do whatever Jacob needs, it was just discouraging.
We got back to see him around 12:30. There was a little issue when they woke him up initially...he did not wake up well. He was completely ballistic, pulled his IV out, and they couldn't get him reigned in, so they redosed him with propofol and put him back to sleep. Got his IV back in and called me back for round 2. I watched him sleep for a bit before he finally started stirring.
He woke up great the next time, with me there, his blanket, and most importantly, a binky. He was awake and talked to me for a few minutes, and went back out. He required oxygen for a few hours, just like the last times. He just cannot keep his sats up immediately postop. They also had to make some fluid adjustments, give him bicarb and lasix for his kidneys like they did after the first treatment, to flush out the high doses of sclerosant used during the surgery.
We were stuck in PACU for a while waiting for a bed. But I got some good cuddle time with my little man. He was so brave, I was so proud of him. He cried very little, but told me when he was hurting or scared. He asked about his siblings and daddy. He was such a good boy. David and I switched off a few times throughout the day. We finally got a room in the late afternoon which was a relief. He was happy to see Asa and Elena and Luke again.
He was doing so good, but as soon as we got settled in a room he threw up immediately. He has had problems keeping things down after each surgery, I guess we need to just expect this. They started him on a scheduled zofran to keep the nausea at bay and get him through the night.
After his IV pain medicine and anti-nausea med, he perked up quickly. He remembers more than we realized, cause he immediately started asking to go to the playroom. We had to get them to take his catheter out, but once they did, there was no keeping him down. It was after 8 and the playroom was closed, but they were kind enough to let us in after hours. He was so excited and off he went down the hall.
He got right to it playing foosball, and superheroes. He played for a bit, but tired quickly. We didn't want to abuse the privilege with them letting us in, so we checked out a couple movies for him and headed back to his room. By this time everyone was exhausted. David and the other kids said goodbye for the night and headed back to our rental apartment. Me and Jake settled in for the night. He watched a few minutes of a movie and passed out. They continued dosing him with his pain and nausea meds throughout the night, so he slept soundly. It was by far the best he has done post op to date. What a relief to see him get a good nights sleep and be comfortable.
He woke up in the morning feeling pretty good. Ate a decent breakfast and kept it down. Did some puzzles, watched a movie, walked to the playroom for a bit. With him doing so good, I was itching to leave so started rattling the cage a bit.
I got our doctors to agree we could go home, but we still had to wait a couple hours for paperwork, etc. We killed some time rollin around our floor on some borrowed wheels, which he really enjoyed.
Finally we were ready to go! David and the kids arrived just about 30 minutes before we left. So together we got some food, Jacob's prescriptions, and headed home. We took a different route away from the hospital to the train and stumbled upon this right next door to the hospital...
Harvard Medical School. Some of the most brilliant minds in the country learning to be doctors. And Jacob's doctors at BCH are all professors there. I am so thankful for their commitment to excellence, and learning, always pushing for advancements in medicine. It is pretty cool that Boston Children's Hospital is sandwiched between 2 buildings...on the left Harvard Medical School, and on the right, the Research building for BCH and Harvard Medicine. This gives me hope that within these walls, they will continue to search for answers for my son. Once we got back home, we were all exhausted, and ALL 6 of us took a nap. We woke up at 8:30 after nearly 4 hours! Needless to say, we all were up a bit later than normal, but it was so worth it! We got up this morning feeling much more rested. Jacob also woke up well, and though a bit slower than normal, seemed to feel pretty good. We spent a relaxing morning at home, ate lunch, before taking a quick outing over to the campus of Harvard University. It being a Saturday, it was mostly full of tourists, but we did get a quick picture with the statue and touched the toe of John Harvard.
Asa and Elena hanging out at one of Harvard's gates.
We didn't stay gone too long, not wanting to wear Jake out, but he ended up sleeping almost the whole time and didn't seem bothered by the brief outing.
We got back and ate dinner, and decided to end our trip as we began it...across the street at Piers Park. The kids played for about 30 minutes on the playground, and then we headed out to the fields and wrestled around and played.
It was the perfect end to an amazing trip. From the before our first trip to Boston, we hoped at some point we would be able to have one like this. The whole family together, and a vacation of sorts. I wasn't sure how we could make it happen, but it did. We owe much to many people who helped make this a reality for us, especially our parents for their support, and especially to my dear NICU family who have done so much for us. I continue to be amazed and humbled for all those who are still touched by our Jacob and have held thought or prayer on his behalf, and for those who have helped lighten the burden. I am so thankful Asa and Elena got to experience this journey with Jacob, and I am in awe of their love and care for each other. Though I know we won't likely take another trip like this for a long time, I am so glad for this opportunity, and we wrung the most out of each moment. Though this trip held difficult moments for Jake and for us, it was even during those times, beautiful as we were all in it together. I love my little family, and once again am thankful for the city of Boston, its people, and for all of you who continue to support us on this journey. Much love from the Casteel's on our last night in Boston.