Feeding Clinic 3mos Follow Up

Thursday we had our three month post-discharge follow up with our feeding teams at the Mt. Washington Pediatric Hospital Feeding Day Program.  It went better than I expected from a process standpoint.  As any mom who's taken more than one kid to a doctor's appointment knows these kinds of appointments can be taxing from a logistics and behavioral and anxiety standpoint.  But in rare form the boys were totally awesome, no tears at all, well behaved and generally happy despite that they were super tired and hungry.  They did the physical examination and then we met with the majority of our feeding team.  This includes one Nurse Practitioner from GI, one psychologist (because we'd just seen the Director of psychology the week before and he'd had another kid he needed to visit with at our appointment), one speech therapist, and one occupational therapist.  Our GI doctor who is the director for the clinic and the clinic manager could not be there as they had some other things going on that day.

It was nice to visit with the group, I really like the people we are working with, and so do the boys because they were friendly and very talkative.  So much so that the whole team was really impressed with the recent developments in their language and expressive skill and how comfortable the boys were to be around the team members in a close confined group setting.  

Overall the boys are doing great, though not gangbusters fast track to our other GI doctor's (we actually have two GI doctors working on the boys) six month goal to have the feeding tubes removed.  I'll talk more about that in a minute.

Evan's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. per report, continues to refuse all higher textures
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses)

Nutrition Per CDC Growthchart:
Weight - 11.5kg(23rd % for age) - *He was 10.9kg at the last day of the program, this is an average weight gain of about 6.5grams per day in the past 92 days.  Impressive considering he got two very dangerous high fever viruses during these last couple of months.
Height - 85.5cm (7th % for age)
Weight/height - 66th%
Evan gets 1300 calories per day, the bulk of which still come from the formula through his feeding tube. But his goal was to maintain a weight gain for between 5 and 10grams per day, so we're all very happy about this, especially since we've been cutting back on the amount of formula he's been getting by 175mls to stimulate his hunger drive and willingness to eat by mouth.  Seems to be working.

I'm very excited about this last weight to height ratio because when we started the program he was barely on the charts at all.  It's probable that he'll never be the same weight or height as his brother, but then they are different people and started life in very different ways medically speaking.  I'm glad that they get to be so obviously different since so many people, especially people who don't really know them well always seem to lump them together as one entity.

Evan still only eats volume from a spoon or straw.  He will touch, kiss and lick pretty much any food you give him but if you ask him to touch the food to his teeth or to bite he will not try, and it is clear that he knows what you are asking him to do.  We know he can do it, we know he has done it several times in the past, but convincing him to replicate those bites is darn near impossible.

Cameron
Cameron's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. Accepts higher textures by mouth (goldfish, crackers, etc) but actual processing and swallowing is minimal
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses but also because of behaviors)


Nutrition Per CDC Growthchart:
Weight - 12.8kg (61st % for age)
Height - 90.5cm (76th% for age)
Weight/height - 46th %

 Again, like Evan, Cameron is getting 1300 calories per day the majority of which is by the formula in his feeding pump.  His weight at clinic discharge was 12.25kg which is an average weight gain of 6 grams per day over 92 days meeting the goal of 5 to 10grams per day.  And since we've also been cutting Cam's formula back 175mls to stimulate hunger I guess it's working for him too.

Cameron is much more comfortable with biting and is starting to use his back molars for chewing, but we can thank teething his two year molars for that.  He takes teeny tiny tweezer pinch sized bites of foods, and will only eat goldfish crackers if you break the fish up in to small pieces nothing bigger than the size of my pinky finger nail.  And his very interested in our food, to the detriment of regular eating of his purees so that we can not present him with crunchy foods or eat our food in front of him or he will refuse to eat his purees. He will then only take minuscule bites and then chew on them forever and avoid eating the volume of food that he can consume via the purees.  So it's not as simple as just offering him whatever is on our plate.  He just doesn't eat enough to be measurable let alone sustain life.

As I've mentioned before our regular GI Dr. Safta, the doctor who put in the initial GJ tubes and later the G tubes, wants to have the feeding tubes removed in six months.  She feels that if the boys are eating enough by mouth to maintain their weight and show some growth that it's okay to remove the tubes.  Dr. Katz from the feeding program does not feel that's enough and I agree.  His rules are that the child must be completely mouth fed including all medicines for a minimum of six months, that they show they can gain an average of at least 4 to 11 grams of weight per day for six months, that they must be able to go six months without any illnesses greater than a general head cold and not need the feeding tube to supplement their nutrition or fluids in any way during any illness, and that the tubes will never ever come out in the winter months because the risk of illness is much higher and if the child gets sick enough to need help from a feeding tube we'd be back at square one with the whole process including another surgery to put the tube back in.  Based on Dr. Katz rules for removing the boys feeding tubes (which is no where near being able to call them "cured" of their eating disorder) there is no chance in hell that we'll be removing them in six months.  I'm okay with that, just anxious beyond words for it to happen.