Last night around 11pm I woke up to the nurse helping Mackenzie out of bed to use the restroom. She said she tried calling my name to wake me up but I guess I didn’t hear her…oops. I helped her use the restroom and she was complaining of her stomach hurting. She has been complaining of it hurting every time she stood up or sat up, but this time she said she felt sick. Sure enough, as soon as we got back to the bed she started throwing up. Then her nose started bleeding so we just ended up making a big mess.
The nurse called the doctor and he said to put the NG tube back in. We waited until her nose had stopped bleeding and they put the tube back in. I hope that is the last time they have to put a tube down her nose. So, now she has two tubes…one in each side. Less than four hours later, they had already drained half a liter off. I guess the container filled up overnight because it was replaced with a new one when I woke up around 6:30am.
Around 7am the herd of doctors came in. He explained that the x-ray they did last night still showed the tube where it was yesterday…her intestines hadn’t moved it anywhere. He said that they were going to probably do another x-ray today but were also going to try to start some nutritional feeding in her NJ tube. He said that they would start with amount similar to what a thimble would hold and that if it went through, then great because that is the best way to get nutrition in her. If it didn’t go through and we see it coming back out the NG tube, then he said they will probably take out the NJ tube since it would obviously not be able to help. He started talking about a hard-set date to where if she is not better then they would do surgery. They said a week from Monday would be that date, which is July 7th. He said that this SMA Syndrome is so rare…he said about 10 people a year come through emergency rooms getting diagnosed with this. Because of this, they don’t have much studies that they can look back on to figure out the best course of treatment. He talked about the surgery…hopefully it can be done laparoscopically, but there is a chance that it would have to be a major open surgery. He also said that this part of the intestine has a higher chance of leaking after the surgery is done…which could increase the chance for an additional surgery. So, with all that in mind, they don’t want to do surgery unless really necessary. He said yesterday that there wasn’t a concern with the intestines being pinched like they are because there are so many blood vessels in that area. If that were to become an issue, she would have other symptoms…bad pain, fever, etc…and they would act pretty quickly if that were to happen. They also said that even after surgery, that it will still take time for the food to move down like it should. For now, her intestines are used to pushing everything back up and it will take time for that to fix itself.
I asked them if she happened to get by without needing the surgery would she ever have issues with this same problem later on? Since she is so small, there is a small window of whether there is enough fat around that area to keep that artery propped up. They said that she would never be out of the woods and would have to always keep up her nutrition and make sure she is gaining weight.
I asked them if this problem could have been there before and the surgery just made it worse. I asked this because every time our family gets the stomach virus, Mackenzie always gets it much worse than anyone else and always throws up the green bile stuff. My concern was that if she doesn’t have to have surgery and then gets a stomach virus later on, she’ll lose weight again and this whole problem will start over again. He said that it shouldn’t be this severe but that she would always need to be careful about her nutrition. She has always had stomach issues and pain after eating a lot. He said that it could have been a mild problem before and just made worse now. I told them that I just want this fixed but that I trust their judgement. I don’t want to push another surgery on her, especially since the first one caused this. I already feel like this is all my fault 😦
I haven’t really been talking to Mackenzie about anything the doctors have been saying because every time they come in, I can tell that she tries to block them out. She will close her eyes and try to go to sleep and then will be non-responsive for hours after. Last night she finally opened up and asked me questions about everything. I tried to explain as best I could what all they’ve told us and I asked her how she felt about it. She said that she wants it fixed and doesn’t want her stomach to hurt anymore but that she is really scared about having another surgery. She doesn’t want to risk this surgery hurting even more things…poor girl. Now she’s terrified. This morning after the doctors were explaining their timeline, she looked a little relieved. So, if she’s comfortable with it, then I’m comfortable with it.
Around 3:00pm the nurse started running the nutrition through Mackenzie’s NJ tube. They started slow with 10ml per hour. I kept watching the tube to see if the color was changing any and around 3:45pm you could start to see it get more cloudy. Mackenzie kept coughing and gagging but said she was ok. When the nurse came in to unhook her so she could go to the restroom, I asked her if the color looked cloudy. She said it looked normal. I helped Mackenzie to the bathroom around 5pm and she said she didn’t feel good and started trying to throw up. The nurse could hear her and said that they were going to stop the feeding and that the liquid in the container did look the formula was mixed in there. So, she went to call the doctor while I helped Mackenzie back in bed.
The doctor told the nurse to take the tube NJ tube out, but Mackenzie wants to leave it in there until we can talk to the doctors in the morning to see if there would be any chance of them putting it back in there later. If there is, she would rather just leave it there instead of going through the whole ordeal of getting it placed again. I don’t blame her.
Around 7:30pm she was lying in bed and said that her stomach hurt. She started trying to throw up but nothing would come up. I don’t know if the nutrition would still be making her sick since it was just a little bit, or if it’s the tubes, or something else…I’m going to mention it to the doctors in the morning, though.
Right now I’m going to watch a movie and hopefully fall asleep!