The doctors agree that now is not the right time to place a GJ tube in Julia. Since it would require Julia to be put under anesthesia, it could put more stress on her heart. And since this procedure is not needed for her health, but is more something for more convenience, they decided the risk outweighs the benefits. They are going to send her home with the NJ tube she already has in her nose. The main downside to the NJ tube is that if it comes out, we have to take Julia to a hospital to get it put back in since they have to use an x-ray to ensure that tube is in the intestine. So hopefully it won't get pulled out! (I accidentally pulled one out the other day when I was visiting Julia. It snagged on something when I was putting her back in the crib. Oops!) We'll have to be careful. She will come home with a continuous feed system. So Bob and I will get "trained" to use one. It shouldn't be too complicated. They are trying to make it so Julia feeds continuously 22 hours a day and then she can take a break from it for 2 hours a day. She can be unhooked from the machine during the day during that time.
After discharge, Julia will be monitored closely by cardiologists at Stanford and at PAMF (Palo Alto Medical Foundation.) If she gains weight and her heart shows improvement, she could get a GJ tube in at a later time.
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