Health Debate

Nathan and I are still debating what to do regarding the NJ feeding tube.

On Tuesday, we spoke with two doctors and two nurses. 3 of the 4 recommended that I immediately call radiology and schedule another appointment for the tube to be inserted. However, I had a number of points I wanted to bring up before proceeding. None of them, except for Dr. Schemmer, seemed interested in listening to my concerns. I was told: "Just try it again. This time don't eat or drink anything for 48 hours" (instead of 24 hours). Not being allowed to even sip on water or Sprite for 48 hours seemed overwhelming. I am, of course, thirsty and hungry all of the time. The nausea prevents me from ever wanting food, but I do enjoy drinking what little I can keep down.

Dr. Schemmer, the perinatologst, suggested that I try to eat solid food and drink the next few days. He agreed that my body didn't react well to the tube and encouraged me to keep eating (even if I threw up). I appreciated him listening to my legitimate concerns. Of the list below, we shared the first four with him.

1) Inserting the tube requires exposure to radiation. Every time I have an x-ray, the chances of one of my children developing childhood leukemia increases 33% (1 in 3000 to 1 in 2000; then 1 in 2000 to 1 in 1400; etc). The nurses tried to downplay this by saying the radiation is very limited, but I can't help but worry.

2) I had the other tube for 24 hours before vomiting it up. I worry that the same thing will happen again and that the x-ray, procedure, pain will have been for nothing.

3) Obviously, I was traumatized by the insertion of the tube. It was not something I want to have done again, even if that seems extremely selfish. I just don't know if I can mentally handle it.

4) The tube rubs one's throat and nose raw. After only one day, my throat was so incredibly sore I could hardly swallow my own saliva. Apparently, the throat and nose roughen or callous eventually, causing the pain to be less intense. However, eating solid food is very difficult, although encouraged. The food pulls on the tube as it goes down the throat, causing immense discomfort.

5) The tube is always there, and I am connected to fluids 24 hours a day. Even while I sleep, I am receiving nutrients and water. I never get a break from being connected to my IV stand and bags. Psychologically speaking, this makes me feel completely disabled and as though I will never get better. On Monday, my first day in weeks without an IV line (or a feeding tube), I felt free. I didn't have to roll a stand to the bathroom with me in the middle of the night. I could walk outside for a moment, and I could finally sleep without a needle in my arm or tube down my throat.

After all of these points, I still have to face the fact that I am still constantly nauseated, throwing up, and losing weight. While physically exhausted, I am mentally feeling much better. Nathan and I are going to wait a few more days (perhaps until Monday) until we rule out another NJ tube. In the meantime, I am going to continue to eat what I can.