GJ tube placed, Day 143

Surgery went well. 

Yesterday was another long day at the hospital. We got a surgery time slot the night before and started the cycle of worry and stress leading up to the dreaded stroller ride over the bridge to children’s hospital. 

If anything positive has come out of this bonus time in the NICU waiting for surgery it’s that we have been doubly reassured that the GJ tube surgery is going to be his best/easiest option. During the time that we were waiting to get a surgery date he spit out his NG tube twice in a sort of gagging wrenching maneuver that left him with a feeding tube going in his nose but looping around and coming out of his mouth. It’s clear that he is really ready to not have that thing bothering him. 

In a stroke of good luck the attending anesthesia doctor who was on for the day didn’t see the need for him to stay 24 hours at Children’s as long as everything went well and so after the surgery he got to come back to his crib with his people at the Bringham which was REALLY nice for us and probably nice for him too. 

Now he has a series of three ports sitting in a little plastic array on his belly. Nobody manufactures a GJ port small enough for infants so Children’s hospital makes them in house by superglueing a number of disparate parts together, but it looks pretty professional. 

Today we will go in and begin the checklist of education about how to operate a feeding pump at home and how to care for the port and know if things are amiss. We have been reassured over and over again that this isn’t a big deal but it does feel like a significant modification to our vision of what it will be like to have him home. 

Nobody knows how long he’ll need the port for but typically babies with bad reflux do better on solid food and he is only few months away from being able to eat mush from a spoon so it might not be too long. Removing the tube doesn’t require another surgery, they just deflate the water balloon that is holding the whole array in and slip it out, it apparently only leaves a small incision that can be bandaged and doesn’t even require stitches.

It is so nice to see Barnaby without anything taped to his face. Already, even in the hours of recovery after surgery, he seems more comfortable. The most common question that we still get is whether there is a date for going home – the answer is still no. We are closer today than we were yesterday. We have seen too many babies get held because of a bad spell or a failed car seat test on the day when the parents were all prepared to take them home to make a claim about when it will be.