Last night after I posted, things got rough pretty quickly. I told the nurse that she had gotten sick twice since last afternoon, so he called the doctors and they ordered some Zofran. As soon as I sat down in the chair, Mackenzie said that her stomach was hurting again and she started trying to throw up again. She just kept heaving and saying her stomach hurt. In the midst of all this, she was crying and said, “I want the surgery”. So, she must have been feeling pretty crappy last night to have said that.
After she got sick a few more times, the nurse checked her belly and felt a knot in her stomach that he said was not there before. He made a call to the doctors and told us that the doctor was going to come check on Mackenzie. Well, long story short, the doctor never came up. I waited up most of the night, my heart beating fast every time that door opened, but the doctor never came up. The nurse gave Mackenzie some nausea and pain medicine but it didn’t really kick in until midnight.
Around 6:30am, Dr. Wormer came in the room. I told him that the nurse had said that he felt a knot in her stomach and that a doctor was supposed to come up overnight but never did. He didn’t really acknowledge my statement and he didn’t even feel her stomach. He said, “I heard that she had a bowel movement last night.” I told him that was correct, but it wasn’t much and it was watery, and involuntary (sorry, TMI!). The nurse last night said that it doesn’t necessarily mean that her bowels are working like they should; it was most likely just stuff coming out. The doctor said that that was good anyway but that the pain she was having was concerning. He said they would be in soon to check on her. I was getting frustrated because he just sounded like he wasn’t concerned after all that had happened last night and with her symptoms getting worse. I didn’t even remember to ask him my questions about the NJ tube coming out. He finally left the room.
Soon after that the nurse came in and I told her that I wanted to talk to Dr. Bambini personally (the head doctor that was over Mackenzie’s care) because the other doctor wasn’t answering my questions. About 15 minutes later the doctor and his whole team came in the room. I told him that last night wasn’t fun and everything that happened…nausea, vomiting, pain, etc. I told him that we can’t keep doing this for another week and a half. He felt Mackenzie’s belly and felt a few places that were hard and were causing her pain. He sat down beside me and said that since she hasn’t been getting any better under his care and has now gotten worse that he felt like they should go ahead and do the surgery. Everything they had tried had not worked. He asked if I was okay with that and I agreed with him. He said that they were going to do some bloodwork and an x-ray and that surgery would be tomorrow.
The nurse came back a while later to take out the NJ tube. One of the Child Life nurses came and tried to talk to Mackenzie through it, keeping her distracted. Her name was Mackenzie, too! We waited until Mackenzie told us she was ready and then the nurse pulled it out. Not nearly as bad as putting it in but the end of that tube is pretty big (where the weight was) and I’m sure that wasn’t fun coming out.
The bloodwork was done pretty quickly and the x-ray was done shortly after (in the room, which makes things so much easier). Around lunchtime when the nurse came back in, I asked her if the bloodwork came back okay. The nurse said that it showed that she was a little dehydrated but that everything else looked okay. She said that the doctor was in surgery right then and was going to review the x-ray as soon as he got out. Depending on what the x-ray showed would decide if the surgery was going to be today or tomorrow. A little later the nurse that works with the surgeon came in the room and said that the doctor had looked at the x-ray and they were going to do the surgery today. The surgeon had a case at 3pm but that it shouldn’t take long, and Mackenzie would be next. I asked her if that meant that the x-ray looked bad. She said that it didn’t necessarily look bad but that there were definite spots where they could see areas of trapped gas/stuff but that it was more because it would fit better into the schedule for today. I don’t know if that was the truth and they just didn’t want to worry me, but oh well. At least we’re getting somewhere now. She said that Dr. Wormer would come in and explain the procedure.
Dr. Wormer came in and explained the procedure, which is called a duodenojejunostomy. Try saying that three times fast! He said that it should take about 2-3 hours and that they hoped to be able to do it laparoscopically. The only reason that they might not be able to would be if her bowels were too distended and too large to see well through the small incisions. In that case, they would have to do the open surgery. He said that she will have the NG tube for 1-2 days after, providing everything starts going down like it should after surgery. Sometimes the intestines are used to backing up and they continue to do that even after surgery, but hopefully this will not happen.
Here is another lovely drawing of what they’re going to do:
Most of the time in the hospital, she scoots toward the bottom of the bed and likes to have her feet hanging off the bed. They even lengthened the bottom foot board, but I guess she likes propping her feet up 🙂
At 4pm we went down to pre-op and they gave her the awesome Versed medicine in her IV. She started giggling and off she went. We got an update that they started surgery at 4:30pm. We got hourly updates that everything was going fine and they started sewing her up at 7:20pm.
The doctor came in to talk to us and said that everything went great and they were able to do it through laparoscopic surgery with 5 incisions. He said that her intestines above the blockage were pretty swollen because they’ve been trying to push stuff through all this time. He said that she should have immediate pain relief and should really only have discomfort from the actual incisions. Her TPN and NG tube suction will be kept on until they are sure that her intestines are sending stuff the right way – probably a couple of days. Then we will start liquids. He guessed that she will be here until about mid-week next week, depending on how she does.
We went to recovery around 8:30pm and were heading back up to the room around 9:00pm. She has been sleepy and will hopefully sleep most of the night, if we can keep her pain under control…she has a PCA pump just like she did with her back surgery so she can just push the button if she is hurting. I asked the nurse when they normally start getting her up and moving after this kind of surgery and she said that she already has a physical therapy consultation tomorrow and they might get her in the chair or just do exercises in the bed. It all depends on how she does tomorrow.
The great thing is that her canister that drains her stomach looks like this, after being on for 3 hours now. There is a few drops of stuff in there but before the surgery this thing would have been at least a quarter of the way full by now! I’m SO EXCITED about this! You folks just don’t even know! I hope I wake up in the morning and it still looks like this!