We had to get up way early to be at the hospital at 0630. David and I got up and were getting ready, and we tried to let Jacob sleep as long as possible. He looked so sweet sleeping, it was hard to wake him up...
He woke in good spirits though, and we made our way to the hospital. In no time we were checked in and back in preop. Jacob did great, and was excited to put on his cape, which he made sure to pack himself in his bag the night before.
BCH's preop is pretty low key, as they do not to anything to your child except take a set of vital signs. Everything painful is done after they put them to sleep. It's awesome. So all we did was have a brief chat with our physician, anesthesia, and the nurses. It was interesting, and I mentioned yesterday, how at our preop appointment, anesthesia had scoured all of his past procedure records and were dissatisfied that they couldn't keep Jacob from experiencing post-op nausea and vomiting. Again before the procedure they reinterated this, and discussed some of the strategies they planned to try this time to improve his experience. You could almost see it in their faces..."oh he throws up every time...Challenge Accepted." I was amazed that they didn't just dismiss this response to anesthesia, as some people just respond that way. Nope. They were determined to make it different this time. Once everyone on the team was ready, I went back with Jacob into the OR. There I held his hand as they put on his watermelon smelling mask, and coached him on breathing deep. He did so great! He was very calm and unafraid, and the team was so amazing. They just talked to him like everything was normal, and talked about what a good diver he was, breathing into the mask. They are so awesome to learn about your kid and find out what speaks to them. I was so proud of Jacob...in a couple minutes he was completely asleep, so I kissed him and went out.
Now our wait began. We got updates from the surgery liaison every hour, and finally our doctor appeared to tell us how it went. Jacob did really well during the procedure. They were again surprised at the size of the lesion, and everywhere he treated an open channel, the blood would reroute and open another one. It seemed like it was a difficult process, and he emphasized the size of the lesion, and the necessity of ongoing aggressive treatment to prevent complication. There again was involvement in the channels going through the ribs, and re invasion of the pleura. He also said there was some connection between the abnormal venous malformation lesions, and drainage of these abnormal channels into the spinal veins, which is a big concern. He also had to take great care not to get any of the toxic sclerosant into these veins. He emphasized the necessity to constantly be aware of any signs of neurologic compromise. He also expressed concern with the muscle on his back. This muscle is becoming very damaged from ongoing invasion from these vascular lesions, and he is concerned about its function, and Jacob's posture and arm strength as a result of this. He wants Jacob to start some physical therapy once he recovers, to reduce the scar tissue and subsequent tightening of that muscle. We will also of course continue to follow with the ortho specialist, the curvature and rotation of his spine. Bottom line, is that Jacob continues to demonstrate the need for ongoing aggressive treatment of this lesion to maintain his health and growth. He still feels we can continue to attack this from a sclero approach (thankfully), but these trips and procedures will unfortunately be a necessity for the foreseeable future. Again though, I will try to be thankful we have options for treatment, and that this lesser invasive approach continues to be effective.
We finally got the green light to come see our boy. He was resting quietly in PACU, and was looking pretty good. We let him sleep as long as possible, hoping he would sleep through the worst of the pain.
Finally, they were ready to see him wake up, so we started to rouse him a bit. He woke up peacefully, and was very calm, unafraid, and seemingly with minimal pain. He even tried to give me a smile.
He soon was ready for a snack and a drink, and I held my breath for his usual MO of getting sick. It never came! Our anesthesia team came by PACU 4 times to check and see if he had thrown up, and were pretty pleased with themselves that he never did. I was pretty pleased with them as well! They tried a slightly different approach, giving him less gases and more melds, and kept him on an EEG throughout the procedure to ensure he was completely asleep. It worked! Again I am so thankful for a team so persistent and motivated to give my son the easiest most peaceful surgical experience possible. They are amazing.
Jacob soon wanted to play something, and look at his Batman sticker book, so he spent some time on that as we waited for a room. Other than an episode of severe pain requiring him to get some Morphine, he was calm and comfortable in PACU.
Once our room for the night was ready, we were moved to the HEM-ONC floor, to the team we who follows the IR kids. We were excited that this weekend's attending on the floor was the Hem-Oc specialist who works in the Vascular Anomalies Center and handles all of the cases of BRBNS requiring the drug Sirolimus. We met with him for the 2nd time back in March if you remember, and he was full of information for us, on all of the newest findings with this drug, and with BRBNS. He is awesome. Immediately after getting in our room, we got a special delivery! Jacob got a stuffed toy and balloons from his best friend Cole Smith, son of my life long friend Jackie (Money) Smith. That was so sweet and a nice surprise for Jacob.
After a bit, we were able to talk Jake into getting up and walking to the playroom. He wasn't too sure about this idea, but it always does him good to get up and moving, so we persisted and up he got. As we thought, he perked up in the playroom, and even played a little air hockey.
It was nice to see a real smile, and though he didn't last long, we had a good time playing. He ate a good (albeit late) dinner, and watched a movie. We slept surprisingly well, only waking a few times during the night, and by morning, he was looking much better.
I felt confident that he didn't need any stronger narcotics throughout the night, and kept his food down, so we were chomping at the bit to go. They actually rounded early, and we got the green light to leave. After another quick game of air hockey while they got our paperwork together, we were on our way.
As much as we love it and are thankful for it, we were happy to say goodbye to BCH for this round. It was a beautiful day, and we all needed some fresh air, so we set out on foot for the Yawkey house.
The previous day and night caught up with all of us, so we took a long nap after getting home. We all felt better after waking up, and the Yawkey house gave us free tickets to the movie theater close by, so we decided that would be a good low key outing for the evening. It is a really nice theater with the reclining seats, so I felt good that Jacob could lie back and be comfortable to watch a movie. The Lego Ninjago movie just came out, so it was perfect. We had a great time.
We still have until Monday night before we return home, so will try to keep ourselves occupied for the next couple days. Thank you so much to all who called, texted, left messages, and comments. Such an encouragement. And thank you again so much for all who held thought or prayer for us this week. Please continue to pray for Jacob as he recovers. Much love to all of you, from half of the Casteel's in Boston.