After lunch we headed back upstairs for another update. They were still working on the left side but things were going smoothly. I knew at that point to prepare myself for a longer than anticipated day. We found a couch for Adam to crash on and took a little break until the next update.
This is one of 4 family waiting rooms on the 3rd floor surgical area. There are 26 surgical suites and today was a very busy day with over 100 surgeries being performed. Their process of communicating to families through RNs is phenomenal. We were treated with respect the entire day and definitely made to feel part of the process. No one was impatient or rude or seemed rushed for time when we asked questions. We met families with children from a few months old to teenagers, travelling from Bermuda to Mississippi. In fact, I'm not sure if we met anyone who actually lived in Boston!
Adam only napped for a little over an hour but long enough to get us to the early afternoon update, which indicated they were finally done on the left side, including the placement of the stent. Off we went to find more things to do...lots of neat fish tanks throughout the hospital.
We also found what Adam has dubbed as "Thomas" - a robotic train that roams the hospital making deliveries from the cafeteria. He thought it was totally cool and kept looking for him. He is sure that Thomas will show up on Sara's floor tomorrow so I am hopeful he won't be disappointed!
A late afternoon update was that surgery could be done by 5:15 so we grabbed some early dinner from the cafeteria and brought it up to the surgical floor in order to be close by for the next update.
Just before 5pm that time was extended to 6:30. Dr. Nguyen entered our family waiting room to talk with us at 5:30. The robotic portion was complete and the first words out of his mouth were "I'm tired!" He explained everything in detail, some of which I am hoping will be written down for me before we leave, like the medications we will need to continue for a bit. He told us the surgery was very intricate. One of the problems he ran into was that the stones were so soft when the robot would try to grab them, they would break into smaller pieces and make it more tedious to remove them. Another issue was that she was filled with gas and her colon kept getting in the way. Some kids are more gassy with eating dairy products and she had her share yesterday between yogurt, ice cream, and milk. All on the approved list but some kids react differently than others. She will be on 2 very strong antibiotics to fight against all the bacteria in her body from the stones breaking up. There is also a muscle relaxer because sometimes the stents cause the bladder to spasm. He is hopeful he got all the stones removed but will have Dr. Rhee do a follow up ultrasound in about 2 weeks. If there are any remnants she can undergo a shock treatment and they will break into small pieces and pass thru her stents before they are removed.
Before our nurse liaison, Doris, went home for the day, she stopped in with a couple more friends. Adam picked which one would be for Sara and which he would keep himself. Then he spent the next hour hugging them and kissing them. Adam kept asking if he could see Sara yet and was very disappointed when he had to go back to the hotel without seeing her. It was going to be a few hours before she was moved to a room and he couldn't last that long. He took Sara's bear with him and planned on returning with the gift the next morning.
Finally at 6:45 I got to see her for the first time. She was pretty rough around the edges. Puffy in the eyes. Red spots on her forehead and tape marks on her face from necessary surgical items now being removed. She was barely awake but in quite a bit of pain. Twice within an hour she woke grimacing that her tummy hurt and they had to give her more pain medication. An IV in each hand and a catheter. Under her little nightgown she had 4 bandaids on her belly that protected the ports of entry, now stitched shut. I gave Shannon an opportunity to go back and then he took Adam back to the hotel.
We made it to a private room on "10 South" around 9:30. This wing is typically for organ transplant patients but the other area was completely full. It took some time to get all her medication administered - antibiotics, muscle relaxant, Tylenol. She will also get 2 different pain medications alternated throughout the night. She has been very thirsty, which is good, but it also causes her to cough and that is very painful. The nurse tried holding a pillow over her tummy to provide some pressure but she didn't like that. She threw up twice and then we had to change her bed sheets. She is definitely not in the mood to be moved in any way right now. And she is frustrated that things are inhibiting her ability to soothe herself by sucking her thumb.
She is finally going in and out of restful periods of sleep and the pain is being managed. The last time she woke she was asking more questions about what the boards were taped to her hands in order to keep them flat for the IVs. And...she wanted a stuffed animal next to her, tucked in with a blanket and given a sip of water. I told her "Sara, you are going to be a great Mommy someday." With a scratchy throat, she whispered "I'm already a Mommy." There's the baby girl I know!
It has been quite the day. I am exhausted but wide awake. We went from thinking it would be a lengthy 4 hour surgery to 6 hours to an actual 10 hour surgery. Phrases like "a massive amount of stones" and "extremely large" kept being used. I will never truly be able to comprehend the level of intricacy that was needed to care for Sara today. But I am very grateful for the hands who performed with such precision. God has been woven throughout this entire process.