They started the procedures around 8:30, right on time. We got updates throughout the morning as to how they were progressing. The first part of the procedure was quick and easy, as the surgeon removed a skin lesion that bothers Jacob. It was simple, requiring just a couple of stitches and some glue. We were excited about this as well, as the doctors wanted to use this tissue sample for research into BRBNS, which we are happy to contribute too. They also took 12mls of blood for research, and samples of Jacob's urine and cheek cells while he was under. After that, they moved on to the sclerotherapy portion of the procedure. They worked on him until 12:30 and then the doctor came out and talked to us. It went well, but was very involved. Even the doctor was surprised and the size and extent of the lesion in his chest. There are multiple lesions all up and down his back on that left side, and is very extensive through the ribcage and into the chest. Inside his chest, the largest lesion is attached to and invades the pleura (the lining of his lungs), which explains the bleeding into his lung cavity that he experienced last time. Because of this, the doctor put a large amount of glue into that side of the lesion to hopefully prevent it from hemorrhaging into his lung. He then put the sclerosing agent into it to shrink it. All in all, he injected into several different areas, focusing most of his work inside Jacob's chest, as that was the area he felt needed it most. He did have a neuroradiologist look at his fluoroscopy imaging during the procedure to see if there was danger to his spinal cord at this time, and he was comfortable leaving that work on his back for the next time. Which by the way, will be in 8 weeks. He was pleased with how it went, but warned of a lot of pain postop as he used the maximum amount of sclerosant he could use and the because of the size of the lesions treated and the density of nerves in these areas. It will hurt with each breath Jacob takes for a while. He also wanted to keep Jake overnight for pain control and close observation. A little after 1 we were taken to the interventional radiology PACU. We arrived there to find Jacob still asleep. This was a relief, as they had already roused him and he was resting comfortably, though still on oxygen.
I had told them that he usually wakes up from anesthesia very disoriented and very angry. They said because of this, they would use a different combination of anesthetic and see how he did. I was very happy with the result. He slept until 2 when they tried to wake him up a bit more. He was in quite a bit of pain, and hard to handle when he woke this time, but settled when I got in bed with him and held him. And they gave him more pain medicine. He had a significant amount of blood in his urine, a side effect from the sclerosing agents, which had to be flushed out. It took most of the afternoon for it to clear, requiring 2 saline boluses, some bicarb, and 2 hits of lasix for my medical friends. They kept his catheter in until around 10 that night as well to follow it closely. I held him all afternoon in PACU, and he slept off and on.
He was transferred to a room in the post surgical floor around 7pm, but still needed oxygen on and off. But on this unit, they are still on monitors and are still followed closely, so this was not an issue. He was still on pretty generous maintenance iv fluids as well. He actually slept pretty well, but they gave him pain meds religiously. Regardless though, he woke up Thursday am in a lot of pain. He threw up everywhere and was in rough shape. He had only peed 10mls since 10pm when they took his catheter out so that was a concern as well. He was really just pretty pitiful the first night.
I had told them that he usually wakes up from anesthesia very disoriented and very angry. They said because of this, they would use a different combination of anesthetic and see how he did. I was very happy with the result. He slept until 2 when they tried to wake him up a bit more. He was in quite a bit of pain, and hard to handle when he woke this time, but settled when I got in bed with him and held him. And they gave him more pain medicine. He had a significant amount of blood in his urine, a side effect from the sclerosing agents, which had to be flushed out. It took most of the afternoon for it to clear, requiring 2 saline boluses, some bicarb, and 2 hits of lasix for my medical friends. They kept his catheter in until around 10 that night as well to follow it closely. I held him all afternoon in PACU, and he slept off and on.
He was transferred to a room in the post surgical floor around 7pm, but still needed oxygen on and off. But on this unit, they are still on monitors and are still followed closely, so this was not an issue. He was still on pretty generous maintenance iv fluids as well. He actually slept pretty well, but they gave him pain meds religiously. Regardless though, he woke up Thursday am in a lot of pain. He threw up everywhere and was in rough shape. He had only peed 10mls since 10pm when they took his catheter out so that was a concern as well. He was really just pretty pitiful the first night.
They had turned off his IV fluids at 6am, but we could not get him to eat or drink all morning, so they restarted them at noon. They did a bladder scan to see if he was making urine or not, and he was, but for some reason was just not peeing. His pain was pretty out of control at this point as well, they decided to give him a dose of IV valium to try to get him to relax, let his pain med kick in, and hopefully relax enough to pee. It made him happy, but did not succeed at getting him to go pee. They were threatening to put his catheter back in, which we obviously wanted to avoid. It was becoming clear to us that we weren't going anywhere today. But since he was feeling good after the valium, we took the opportunity to get him up and walk to the playroom. Bless his heart, our walk was really a slow shuffle, but once we got to the playroom just down the hall from our room, he perked up even more. This is all relative of course, as he was still nothing like his normal self. But he played at the train table, talked a bit, and looked out the window and watched it snow.
We stayed about 30-45 minutes until he couldn't stand up anymore, and I carried him back to the room. We found when we returned that he had a wet diaper! That was a huge relief. He was exhausted after his outing, and after a dose of pain medicine, he passed out and slept for 5 hours! Upon waking, he still was hurting quite a bit, and would not eat or drink. We settled in for another night in the hospital. These were a challenge, as David would have to stay with Luke until his nighttime feeding (around 10) and then go back to the Inn, and return around 7am for Luke's morning feeding. We were just hoping Luke would sleep all night like usual, and he did. I was not willing to leave Jacob, so David and Luke made the commute. Luke really was a trooper through the whole thing, as he had less of my attention than normal as Jacob needed me most of the time. Luke is such a good baby though, and just goes with the flow. Love that little guy so much!
Jacob & I slept pretty well overnight, but he woke up in a lot of pain, as they let him sleep longer between doses last night. It took a bit to get him comfortable, but once he was, he actually ate some breakfast and sipped a little bit of chocolate milk. He seemed to be feeling some better.
They turned off his IV fluids and said if he could drink enough, and we felt comfortable, we could go home. We took another outing to the playroom, which he enjoyed, and even decorated a cookie for valentine's day. He was rocking his superhero cape, and was feeling pretty good.
After an hour though, he wore out and we went back to the room to rest. He ate lunch well, and drank 2 boxes of apple juice. We quickly told the nurse and got our walking papers. We left the hospital around 3 after getting his prescriptions filled, and returned to the Inn. It was amazing after leaving the hospital and getting back to our temporary "home" how much better he was. It was the first he has seemed at all like himself since the surgeries. He really had a shot of life. He played for about an hour, and then laid down and we all slept for 3 hours! It was much needed rest for us all. He woke up the best he had yet and we went and made some supper in the kitchen, and he played a little more and got showered and ready for bed. He is so happy to be out of the hospital, and though still requiring pain medicine, is really doing well. It took quite a bit of doing as well to get our lodging secured for the weekend, but it seems the weather worked for us on that, but against us for our flights. Because some families couldn't get in, their cancellations allowed us to stay the weekend at the Inn, but also, there were no available flights leaving Boston until Monday night. So we are resigned to spending another weekend here away from Asa & Elena. We miss them so much, but am glad the snow down there has provided a nice distraction for them, as well as school being cancelled let them have a sleepover with their cousins. They were so excited about that.
It has been an exhausting 3 days, and we are so thankful for all the kind words, thoughts, and prayers. Please continue to keep us in your prayers as we are anxious to get our little family back together. Love to all of you!
Thank you for the updates! We (Copperas Branch Baptist Church) continue to pray for Jacob & your family.
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