A Day I've Been Dreading For Three Months

I've been dreading Thursday for three months now. Tomorrow we are going to the hospital to get Sweet B evaluated by the Feeding Team. It will consist of doctors, therapists, and different specialists. They will watch us from a one sided mirror, and I will feed Sweet B two foods that she enjoys, and two foods that she refuses to eat. Choosing both will not be difficult. There are only a few foods that she will eat and nearly all foods fall into the "will not eat" category.

I'm not nervous about getting any new diagnoses. A month ago she was diagnosed with migraine disorder that goes along with her cyclical vomiting syndrome. I'm sure that more will come up over the years (don't we all get new diagnoses over the years??), but that's not on my mind tomorrow. My fear is that they will tell me to continue doing as I am doing. While that might sound good to most, to me, I know that what I am doing is NOT working in the slightest bit. This child has had years of feeding therapy. She knows how to chew and swallow food. Sure, she still pockets it in her mouth and she lifts her tongue upwards and likes to deposit the food under her tongue, but she can get that food down her throat.

I've heard that this particular feeding team feels that a slow approach works best...They do not often recommend the intensive tube weaning program that I strongly desire for my girl.

I'm afraid that Medi-Cal will not approve of an intensive tube weaning program.

See, in order to understand why Sweet B won't eat, I need to give you some details as to how her body and brain work (which is really the same as everyone's). In order to desire food, you have to feel hunger. We are tube-feeding her boluses (a bolus is formula given all at one time, usually over 5 minutes, instead of through a feeding pump which is continuous, which she does at night) of 5 ounces three times a day, and she is on a constant feeding pump throughout the night, which is hooked up to an IV pole by her bed. Given this schedule, she does not get hungry. So imagine someone trying to get you to eat when you don't feel hunger...you're not going to do it and it'll probably make you want to puke.

So you're probably going to ask me, "Why don't you get her hungry then?" The answer is that we try. For about a month, we were given permission to skip her dinner bolus. She got very hungry, and for a week I took her out to ice cream for dinner every night. She ate it. I didn't care that it was ice cream. Then we did a week of yogurt. Some nights it worked really well. Others it didn't. I took her back to her GI doc for a weight check and she had not gained weight. Doctors are primarily concerned with weight and whether or not she is getting enough nutrients to live and thrive, and therefore, I was not allowed to skip her dinner bolus any longer.

I continued to try to get her to eat and her oral eating almost completely stopped. I called the doctor and begged her to let me go back to skipping her bolus. She said it was okay as long as I brought her in for weight checks. But the thing is is that she wouldn't go back to eating...Sweet B had learned something in her smartness...that I would never let her go hungry. If she didn't eat her yogurt for dinner, I wouldn't bolus her, but in four hours she knew she would be hooked up to that feeding pump, and her hunger would be satisfied. You simply cannot withhold food and water from anyone, unless you are wanting them to die.

She has outsmarted us. She is smart. Eating is uncomfortable to her and scary, especially when she is on the verge of a cyclical vomiting episode.

What is truly required to wean someone off a tube is total starvation. They like to see crystals in your urine to show that they are truly dehydrated. Now, I will absolutely not do that at home. I will not bring her body to dangerous levels of malnutrition and dehydration. I'm not a doctor. She needs to be in a hospital, getting her levels of everything checked often. She needs a therapist to help her deal with her fears. She needs a feeding therapist to help her with her chewing.

The Children's Hospital of Orange County is where I'd like her to go. It's a three week program where she lives there, as do I. Now, the thing that makes me ill is that Strong Boy B is two years-old. He needs his mama. He's still nursing and I will not take that away from him at this point. It's been a beautiful part of our relationship and I've dealt with so much horridness by way of trying to feed Sweet B, that Strong B's nursing is my saving grace. He'll have to go with me but live in the Ronald McDonald House with my husband or my mom. He won't be allowed to see her except on the weekends. That's hard stuff. But I'm willing.

I've heard there is a long wait for the program, and I don't know that Medi-Cal covers it, but she is an optimal candidate.

Sometimes they'll admit a child to our own hospital for a tube-weaning program of shorter duration. This is probably my first choice.

I have written the feeding team a long letter stating that I do not want to leave there with suggestions that I already know. Trust me, I could teach a class on tube-feeding and how to get kids to eat, theoretically. The answer doesn't lie in peer pressure or taking them to a fun restaurant and having other kids eat around them. It's much deeper than that. And we've done everything. We used to often get suggestions from people that made us want to scream. Have you tried this? Have you tried that? I think the suggestions have stopped because people either think we are clueless and there's no hope for us, or they've seen the light, that there really is a problem that is not easily handled. I know they did it out of kindness, but we still wanted to scream. I really don't want suggestions from the feeding team tomorrow that make me want to scream.

I will go into the evaluation with my open heart and a sense of urgency. Let's take care of this NOW. We are doing a disservice to her by not doing something BIG to get her off this tube. The time is now.

I've already spoken to Sweet B about why we are taking her and why we want her to eat. She knows.

Yesterday I finally felt such peace about tomorrow. A friend has been praying for me and I could feel those prayers. Today I woke up feeling sick with anxiety. I have foot surgery on Friday and once Saturday rolls around I will feel so much better. It will be over.

Please pray for us and the feeding team. I know that they want the best for their patients and I know that they care deeply. Please pray that God will give them the wisdom, and that God will give me peace and understanding from whatever is answered. If I have been wrong in which way I desire her to be treated, I pray that I am not stubborn and that my ears and heart will be open.

And most importantly, please pray for Sweet B, that she would not be afraid and that she would show those doctors that she has a desire to eat. Thank you friends.