Eating Issues and the Feeding Tube

Well, we didn't really expect this trip to Phoenix Children's Hospital to be a cake walk; taking a child to the hospital is never an easy thing, especially for surgery, but this trip has been particularly hard. And it came at the end of a particularly hard week.

I realize that I have a difficult time describing Lu's eating problems to family and friends. Eating is such a natural part of life for most of us, a life-sustaining and enjoyable part of life that I think it's hard for most people to even imagine what it is like for Lu. We've gotten a lot of well meaning advice to either let her not eat and then come to it when she's good and ready because, after all, no child will really starve themselves to death; or to strap her into a high chair and not let her leave the table until she eats because eventually she will eat, or to actually force the food into her mouth and make her eat, kind of like when you make your dog take pills. Like I said, I know all of this is well meaning, but none of it really works with Lu. And believe me, we've tried a lot of things- read books, watched videos, attended feeing workshops, tried to be strict, tried making food fun, painting with it, cutting it into funny shapes, arranging it differently on the plate, tried to let Lu pick things out and help cook. We have tried a lot. Lu's therapist Dr. G came up with what I think is a pretty good analogy to explain things: 

Imagine being a 2 year old in terms of comprehension and being told that in order to grow you have to press your finger against a piece of hot metal every day. Maybe not hot enough to instantly blister, but hot enough to leave a small red burn every time. At first you might do it because your parents ask you to and it makes them happy, but after awhile the pleasure of making them happy will wane and the pain will overtake the pleasure and you will refuse to burn your finger. So your parents might try to entice, reward, even bribe you to touch the hot metal. And this might work for awhile too, but again, eventually the pain will win out and you will refuse to do it. So then comes threats and punishment, which again may work for awhile, but we are all animals and the adversity of pain will win out over the threats and punishment eventually. Especially if the pain increases over time, as it has with Lu as her EE has progressed. And I have always wondered if Lu actually connects the feeling of hunger with food. I'm pretty sure at this point that she connects food with pain, and it's possible that even if she realizes food relieves hunger pains, but the pain of eating may be greater than the pain of hunger. So this is why I don't think that allowing her to starve herself until she is ready to eat will work. She has been starving herself into the 'Failure to Thrive' category for ages now. Let's face it, the reason hunger strikes work in political situations is because it is really really hard to force someone to eat when they are determined not to. And I'm also not crazy about restraining, coersing and threatening her into eating when pain is involved because of the fact that I want her to trust me and believe me when I do tell her that something will or won't hurt her, is or is not good for her. I also want her to tell me when someone or something hurts her and have her know that I will believe her and take her seriously and do everything I can to fix the situation. I do not take this trust lightly. If I restrain and hurt her myself, meal after meal, day after day, what am I teaching her? That brute force wins? That I can make her do what I want/think is best because I am bigger? Or that her feelings don't matter to me? I don't want to teach her any of those things.

So anyway, these are some of the reasons that once she started refusing all food, and then finally water by mouth, we decided to pursue the feeding tube option. Like I said in the last post, we did not arrive at this option lightly. It took a lot of talk, a lot of time and a lot of tears to get here.

The thing is that once we got her down here to the hospital in Phoenix, we had to wait in the ER for about 10 hours for a bed to open up upstairs. And in the meantime, she tested positive for RSV. RSV, or Bronchialitis is basically just a really bad cold with lots of mucus and a chesty cough to most adults, but to kids, and especially infants, it can be pretty serious. Myffy got RSV when she was 2 and a half months only and it very nearly killed her.  Right now there is an RSV outbreak at Phoenix Children's Hospital. Lu was put into the isolation ward and the G Tube procedure had to be postponed because they don't want to put her under full anesthesia with a respiratory infection. The GI doc and the surgeon are both supposed to see her tonight and make the call whether or not to still try to do the procedure tomorrow, the next day or to discharge her (assuming we can get enough food/fluids in her to sustain her) and reschedule the procedure for later. What a mess.