This morning the nurse told us that the plan for today was to place a NJ tube into Mackenzie. The NG tube would be taken out. The NJ tube goes down past your stomach into your intestines and delivers nutrition through there. The hope was that while they are inserting it that it would be able to be pushed past the blockage and then stay there while she gets nutrition the right way…and then she would theoretically gain fat and weight and the issue would resolve itself. The nurse said that the procedure would be at 2pm.
One of my questions was that if this does fix itself, would it ever recur? I asked the ortho doctor (Dr. Pulaski) this when he came by this morning and he said that out of all the cases he has seen of this, he has never had an incident recur. He follows these kids years and years after their surgery and of the ones who had SMA syndrome, he hasn’t seen anyone have any recurring issues. He said that the older you get, naturally you gain more fat and the issue resolves itself.
Somewhere in the morning we got to see another therapy dog. Wendy, a miniature Collie, came by to see Mackenzie today 🙂 These were the only smiles out of Mackenzie today 😦
Later on in the morning, the nurse told us that she would be the one inserting the tube, and that the radiologist would finish guiding it through her intestines using the x-ray machine. These damn tubes have been the worst part. I would even say that Mackenzie has hated these more than any pain she had with the actual spinal fusion. I hate them, too, and I’ve never had one So, the nurse comes in at 1:30pm to take out her NG tube. That part wasn’t bad – it only took a few seconds to take out, but it wasn’t fun for Mackenzie. She kept coughing and it sounded like it was a little tougher to get used to breathing for a minute. Then came the dreaded insertion of another tube. I got some water for her to start drinking and the nurse started inserting the tube. Mackenzie coughed/gagged, coughed/gagged/cried, and coughed some more but it eventually went down. It seemed to go down much faster than the NG tube did in the ER. Finally, the transport person comes to wheel her down to x-ray.
I got to stay in there with her while they did everything, which was cool. I’ve even seen the radiologist before…he was the one who did Cayden’s VCUG tests while she was in the hospital a few years ago. Anyway, they got her situated on the table, we all got our lead vest/suits on, and the radiologist started pushing the tube down through her intestines. Before he even started, he told me that sometimes these procedures don’t work and that they just can’t get the weighted end of the tube through the intestine. He said that they won’t force it, though. If it doesn’t go, it just doesn’t go. He started moving it through and finally got to the spot he needed to. They pushed some air into the end of the tube, trying to get it to open up but it didn’t work. Then they put some contrast dye in there to be able to see where the fluid would stop (or to see if it would go through). After turning Mackenzie to her side and then on her back again, he couldn’t get it past the blockage. You can see where the contrast dye just goes into a point where it can’t go anywhere else. He suggested that she try to lay on her left side as much as she can and that they would do another x-ray to check and see if her body would move it where it needs to go.
We got back to our room and Mackenzie went to sleep…she was exhausted after everything today. At this point in the afternoon, the doctors had still not been in.
Finally, around 4pm the doctor came in! I was so excited to see him. He was talking about the NJ tube being in place and putting nutrients in. I asked him how that was going to work because if the contrast dye wasn’t getting through, then how is the nutrition going to get through? He explained that since day by day her stomach output has been getting less, that the fluid is going through somehow and that the nutrition that she will get through her NJ tube shouldn’t back up into her stomach and cause her to be sick. This just didn’t make sense in my mind because I clearly saw the blockage on the x-ray screen. I asked him about what would happen if she gets sick and he said that they will just treat the symptoms as the come (if she needs the NG tube back in her stomach then they will put it there if she feels sick or starts vomiting). Then he started going on about all the different types of tubes and maybe she could go home with tubes that would gradually increase her feedings. It just didn’t make sense in my mind why he was trying to do all this when the x-ray showed what it did. Then he said that these things normally resolve themselves after a few weeks and that he is starting the counting at the day of diagnosis, which was yesterday. One to three weeks of watching her from now? We’ll be in the hopsital all summer! I was thinking in my mind, “Why wouldn’t they count this from starting a day or two after surgery?”. Again, it just didn’t make sense to me. He mentioned that it’s a slow process and all of this is to avoid another major surgery, which I agree with…but damn. How long is this going to go on? He said that the goal is to build up the fat that normally surrounds and cushions the intestine where hers is pinched. That’s done through nutrition and getting her back to a normal weight. He also said that swelling from her spinal surgery may have played a part in this and is what is making that artery pinch her intestine. So, by the time he left the room, the first goal was to see how the nutrition would do (he said they would start it this afternoon). And then see how she did after that. If she did good, they would increase the feedings, if not then we would do something else. After he left, I just felt like none of my questions were answered. Or, more like he answered them but they just didn’t make sense.
So, 10 minutes go by and the doctor comes back into the room. He changed his story completely…apparently he hadn’t seen the results of the x-ray before coming to talk to us the first time. He started asking me when this all started and I told him the day after surgery. Now, he is counting today as day 11, which is what I was thinking he should do in the first place. He said that at about 2 weeks after the SMA syndrome diagnosis, if it hasn’t gotten better by then then it probably won’t get better. He mentioned that the x-ray notes mentioned a “high grade obstruction” and that if the contrast dye didn’t get through, the nutrition wasn’t going to get through (which is exactly what I said the first time he stopped in). So, they won’t be starting the nutrition through the NJ tube tonight. He said that surgery was probably going to be the solution, more likely than not. He mentioned that she will probably need another NG tube to decompress her stomach since she will most likely be nauseous from stuff backing up. Ugh. So, now since we are getting closer to the time period that he originally said (2-3 weeks after diagnosis), surgery is getting to be more of a possibility.
It’s really just a waiting game at this point. I trust the doctors but it’s just so frustrating to have to wait. One way or another I just hope things start getting better…either on their own or by surgical intervention. I’m ready to go home. I miss my kids. I miss my bed.
An ultrasound tech just came in the room and did an x-ray of Mackenzie while she was in the bed, so hopefully we will get those results in the morning when the doctors make their rounds.