Phone Calls

They told me I would receive a lot of phones calls the week before admission.  I was nervous that it was only one week before admission that I would be getting more specific info about the feeding program because I like to think and prepare way ahead for stuff like this.  Last week I was feeling very nervous and even scared for the feeding program.  But this week has been much better because of all the great phone calls.  I talked to everyone for about 30-60 mins each plus lots of emails back and forth.  I am now feeling more excited and confident.

First I talked with the social worker!  She was so great and answered my millions of questions! She told me more things about what to pack and what to expect from the feeding program.  She said I should tell Whitney we are going to "CAMP CHOC" to learn how to eat and have fun!  I've been telling Whitney about it all week and she is looking forward to going, just her and me! She will help me pack her bags and bring her favorite things.  Whitney even helped me make a poster with a calendar on it and a sign with her name on it to hang up in our new room at Camp CHOC!

The next day an Occupational Therapist called me to talk about Whitney's eating routines and schedules. She also wanted to know what motivates her and helps her eat, and how she is doing with eating skills at home.  Whitney simply washes her hands and sometimes we say a prayer over the meal.  Then I just encourage her to take bites of food.  If she doesn't, then she wants to use our "fuzzy jar" where she gets to put in a fuzzy ball after she takes a bite or a drink.  When she gets all the fuzzies in the jar (about 50-75) she can watch a movie, or play with her leap pad, or whatever else we may want to do.  The OT says they can’t guarantee a tube wean but their program will help her eat a lot more.  My goal is a tube wean of course, but I don't have a time table for that.  This program will give us amazing results as long as we follow their counsel and apply the tools to our everyday life.

Third, I got a phone call from the diet tech.  We discussed things that Whitney enjoys eating.  Like apples, cheese, crackers, carrots, broth/soup/sauce, yogurt, scrambled eggs, cheerios, smoothies, juice, and milk.  When I say eating I mean that she will take tiny nibbles of foods when encouraged or coaxed.  The diet tech will help me choose meals for Whitney every day at CHOC.  We decided she could probably benefit from 6 meals a day instead of just 5.  So hopefully we cant squeeze in an extra bedtime snack.  They will be using Compleat Pediatric Formula for supplementing Whitney at night time and extra water too.


Then I got a phone call from the GI Nurse.  She wanted to make sure that Whitney was still healthy and how she was doing.  I told her she was good except a couple weeks ago she was a little sick and throwing up for two days so we had to just give her water and half formula for two days.  But she didn't get any worse and did just fine with full formula the next day and has been doing great since.  Whitney still vomits a few times a week.  Which has been a life long battle, but we hope and believe that Whitney won't throw up (as much) if she eats food by mouth and can regulate her body.  GI Nurse wants her to stay on her meds and be feed as normal before the program.  She asked if it's okay to have milk of magnesium on call at the pharmacy in case of constipation.  Whitney has never had troubles with that but she may the first few days of the program so it's best to take care of that so she doesn't feel bad.


Fifth, I got a phone call from the psychologist.   We had a long conversation about Whitney's test results and how to help her with things that she scored low in or below average.  The Dr. thinks she will do well in the feeding program and they can help her in a way that works specifically for Whitney.  Every child is different so it's good to know what Whitney's strengths and weakness's are. I'm so glad that this program includes a psychologist because oral aversions and feeding difficulties are psychological.


Lastly, is the big conference call from the whole team! There were seven specialist that took turns talking and discussing Whitney's goals for the program with me.  The first day she will get her normal tube feedings in the morning, then we will have one therapy session at 3pm.  Then I feed her (real table foods) dinner around 5:30pm and a night time snack right before bed.  Then the next day will be more intense. The whole team is very smart and experienced.  I'm feeling really good about this feeding program for Whitney and I!