GI Doctor Visit

Baby Henry went to the pediatric gastroenterologist (GI doctor), who met us with a dietician. The pediatrician, pulmonologist, and swallow study all pointed to a GI in figuring out any underlying causes for vomiting and feeding issues.

The doctor didn’t seem to have any prior knowledge of our case. The first thing she asked is, “Why are you here again?” It was not in a “tell me what’s going on” way, but in a “why do you need a GI” way. Did the GI department actually review Henry’s case before accepting him and allowing us to schedule?

We went through the whole song and dance, a barrage of information so often repeated at these visits that it feels rehearsed. I shared his history, his feeding issues, the treatment plan, the swallow study results, the determinations from all the other specialists, what we’re doing at home—even though every provider we’ve visited takes notes on the same system and everything is right there in our medical record… even though we just filled out this info in the online checkin forms… even though you also asked me this crap in the paper intake form I filled out with a screaming baby and handed to your people 5 minutes ago.

“What are your goals? Do you want the feeding tube?” She doesn’t deal with the feeding or in observing him eat. They are referring us to a feeding clinic in Lehi to see if they can help get a plan for weaning from the ng tube. 😔 I thought that’s what we’re already doing, but she said it’s actually separate from and in addition to the feeding therapy and nutritionist we already see. I called the clinic and found out the soonest we’d be seen is July for the Lehi location which is too late for the GI doctor, so we’d need to go to SLC at another early morning appointment.

I’m tired of the runaround with these medical doctors. I’m tired of their bandaid fixes and piling on more clinics and studies and referrals and follow ups in a twisted attempt to be helpful. Shouldn’t they at least examine him at these appointments? The doctor didn’t even touch Henry. It feels like they’re grasping for something to assign me instead of trying to get to the actual problem. These visits all result in, “Hmm, we seem to be all good on my end, but you should try checking _______. That’s not what I do, you have to go to _______ (insert something very inconvenient or unpleasant), but come see me again in ____ weeks/months.”

I’m starting to push back instead of trusting and complying, because so far I go to great lengths and none of this is helping.

No answers as far as treatment or recommendations—“just keep doing what you’re doing”. So helpful, I’m glad this is costing a pretty penny and that getting here felt like shooting myself in the eyeball. At least there are no new meds and no recommendations for surgery.

We think the vomiting was resolved with the acid reflux medication and change in formula. He is taking at least 33% of his feeds orally right now.

Although he gained weight, it’s not as much as we want, so they are increasing us to 24 kcal to support his trajectory.

I was already on edge from spending a literal half hour in a Parking version of Hunger Games, so instead of being early I was rushing and in a terrible mood with a screaming baby. My last resort was stalking a family coming out of the elevators and waiting for them to leave while aggressively signaling to everyone nearby that their spot was MINE. I learned the hard way that the visitors to the children’s hospital are ruthless drivers and will steal every spot you are trying to claim; do not schedule on Tuesdays when everyone does their clinicals so parking is past capacity; and ignore the signs about Compact Cars Only with fines and towing because it’s not actually enforced.

I wish we gleaned more insight or helpful information from this visit.

On a positive note, I tried out their cafeteria food and the patatas flautas was delicious. Also their large bathrooms work well for using the restroom while the baby is being fed on these long doctor trips.