Close, But No Cigar

We headed up to Johns Hopkins today to see if the gastrointestinal program could help with James' dietary issues.  We were cautiously optimistic as many other doctors had brushed aside our concerns regarding James' propensity to vomit any formula he is given.  But, when the doctor said we could get him on a blended food diet we were ecstatic!  Just what we wanted but no doctor in our area could help us do.  We had a great five minutes as the doctor went to find the nutritionist to get us started.  She returned, sans nutritionist, to say that their blended food diet was being revamped and wouldn't be able to get us started for another couple of weeks, until testing was completed.  They gave us a new formula (formula #4) to try in the interim.  We are left conflicted.  Should we try the formula?  Is it possible that this formula work?  But, looming even bigger, what if this formula is just like all the rest that make him gag and throw up, cause constipation, and lead to nasal congestion and airway irritation?  As we head off to vacation we need a food "back-up" plan in case we run out of milk. It looks like we have reached the last resort where we develop a blended food diet on our own.

I understand the doctors' hesitation to get us started on a program they themselves don't understand.  But, it is sad that we are at the point where formula is the standard recourse for kids with tubes.  Shouldn't blended food diets be an important topic in medical school?  Feeding tube are more and more common, not just for kids, but also for adults who can no longer eat by mouth.  Shouldn't we try to help these people live as normal a life as possible?  Wouldn't real food help achieve that goal?  Doesn't real food, not processed junk, help people feel better and live healthier?  Shouldn't our child be offered that same opportunity?

I am glad to hear that Johns Hopkins is developing a program to promote blended food diets.  I sincerely hope this will catch on and spread to other practices.  As I research the benefits of blended food diets I find many stories of parents in our same situation: their tube-fed child is not thriving on formula, they want an alternative and the doctor will not offer one.  The parent then takes control of developing a suitable diet, makes it at home, feeds it through the tube and, very soon, the child is healthy, happy, and thriving.  There is definitely something broken when we are offered two options: breast milk, which I won't have enough of for much longer, or formula that makes him throw up.  What would have been done before formula was available?  There has to be another option.

We will have to sit down tomorrow and make some big decisions.  We don't like the idea of going it without a nutritionist, but it may be necessary.  We have seen the difference a healthy diet makes for James.  Now that the formula is out of his system he is thriving.  His physical development had moved forward with great leaps and bounds.  As parents, we have the right to do what we think is best for our son, to take control of our son's diet if necessary.  We have always advocated for our son, but this is the biggest counter-medical decision we have had to make.  I am the one home with him, watching his face turn red as he gags and finally throws up his entire meal.  I am the one whose heart breaks when I see him in pain.  I am the one who understands the immensity of his dietary problems.  James has gone through enough, it is about time we make his life a little easier.

Please keep us in your thoughts and prayers as we decide how to proceed.  If we go forward with the blended food diet I will provide more information.  Maybe it can help some other parent out there.

Here's a little video to lighten the mood.  James LOVES the paper on exam tables.