My little Foodie

Brandon at feeding therapy

When Brandon was born, he did not have all the natural reflexes that most kids have at birth.  He had no ability to suck and no ability to swallow.  He had no ability to gag when something went into his mouth.  He did not have any of these natural abilities.  But of course everyone wants their kid to eat and thrive.  So for 4 years Brandon had intensive "feeding therapy".   Leaving the hospital after birth we had a therapist come several times a week to help strengthen muscles, help develop a swallow and try to help develop some gag reflex.  But by the end of the year we were not successful.  Brandon had lost so much weight from being tube fed down his throat that we had to make the decision to have a g-tube placed in the stomach and at the same time have a surgery called a fundoplication.  The surgery does not allow food to go directly down to the stomach helping ease any reflux that kids may have.  However, the surgery is a major surgery and most kids end up in ICU to recover.  Brandon was in the hospital for several weeks trying to recover from both procedures. 

After placement of the g-tube, we went to a feeding specialist team in Houston and a team in Austin to start a feeding program to again develop his ability to eat food through the mouth.  We did this intensive therapy for 3 more years.  But again Brandon was not actually eating anything through his mouth. 

I bought some land in Dripping Springs when Brandon turned 1 with plans to build a house.  Brandon and I went to the land every weekend to work for several years getting it ready to build.  One day we were by the creek.  I brought some juice to drink and left the bottle next to Brandon.  While we were sitting by the creek Brandon grabbed the juice and tried to drink.  He would not let go.  He was clearly telling me he wanted to drink through the mouth.  I decided that 4 years had been long enough.  I asked all the therapists to meet with me and decide how we were going to get Brandon eating within the next year.  Every year I take on one big issue with Brandon and decide even though there are many issues we could address, I would 100% concentrate on trying to tackle one.  So this was the year of trying to get Brandon to eat. 

After getting all the therapists in one room, we decided if this was going to happen, Brandon needed to be admitted into the rehabilitation hospital and have intensive therapy.  The plan was to have him inpatient for at least 1 month.  So Brandon and I packed up our stuff and started the month long hospitalization.  It was gruelling.  Intensive therapy all day for Brandon, building strength, building his swallow and trying different foods.  But by the end of the month Brandon was eating about 18 ounces of food safely through his mouth.  His favorite was chocolate pudding.  He was a mess but there was not a dry eye in the place when he finally could get the taste of food in his mouth.  Brandon loved it and finally knew what he was missing.  Imagine not tasting anything through your mouth for your entire life, but smelling food and watching other people eat. 

We had to be very careful the next few years to build his strength in swallowing, build the amount he was intaking and with a goal to have Brandon eating enough food to maintain his weight and thrive.  We worked as a team with his school, his aides, his therapists, his doctors to make this transition a success.  Finally around age 6, Brandon was eating enough food to maintain his weight and loving it.  However, because we had to be careful of what types of food his could eat his diet was not meeting all his nutrition needs.  Therefore, Brandon also learned to drink Pediasure to supplement the unusual diet of peanut butter, chocolate pudding, mac and cheese and goldfish.  Brandon learned more and more food choices for the next few years. 

When Brandon was in 3rd grade.  I received and emergency call from the school that they had just called 911 and that Brandon had choked.  They were trying to perform the heimlich on Brandon and were waiting for the ambulance.  I headed to the school to meet EMS and found Brandon now breathing, but it was clear that he had aspirated on his food.  EMS and the school revived Brandon.  I took him home and he started getting worse from the aspiration and we ended up in the ER.  The next week we did a swallow study to see if there was any damage from the lifesaving treatment from EMS and the school, and if there were any changes in his ability to swallow.   Brandon flunked the swallow study.  For the next year we had to go back to 100% food intake through the g-tube again.  Brandon was very unhappy and was motivated to strengthen his swallow and get back to eatting.  After another year of intensive therapy Brandon again started eatting through the mouth safely.  But I had some frank conversations with his specialists.  The safest thing for Brandon would be for him to never eat through the mouth again.  However, there are some quality of life issues involved.  Brandon really loves food.  Brandon would be really unhappy never having anymore food through the mouth.  So I made one of those parent decisions (you know the ones that you hope are right) and decided "quality of life" over safety.  I stopped focusing on making sure Brandon has every nutrition group.  I stopped worrying whether Brandon should or should not drink Pediasure.  I just decided Brandon could eat whatever he wanted to eat either through the mouth or through the g-tube.  I would supplement for nutrition with pediasure.  This was really about what Brandon wants. 

Brandon is now 18 and after my visits this week with the pulmonologist and the pastroentolgist everyone is again concerned that Brandon is aspirating.  He does have many of the symptons.  Respiratory issues, frequent pneumonia without major temperature, having loss of air at certain times and now three times Brandon has had very low oxygen rates.  The doctors have asked me to stop feeding Brandon through the mouth until we can do some more testing.  Those will happen next week.  We are hoping Brandon's lungs can recover long enough so that he can resume eating, but at this point we really dont have many answers.  I am hoping as a mom I dont have to make that decision one more time about "quality of life" vs "safety".  you know those parent decisons that you hope are right.  I also will feel bad this week for Brandon that he cannot eat food through the mouth for another week. 

I have to give a big thanks to Holly and Marissa, Brandon's school nurses for helping us through all of this the last few months.  Without them I am not sure what I would do. 

So think good thoughts for his test next week.  We will send an update soon.

Leah