Another Surgery Upcoming, Day 139

On Wednesday we set up about eight folding chairs in a circle in Barnaby’s little corner of the GDU for yet another meeting  with GI specialists from  children’s hospital. The discussion was long and left us better informed but also more frustrated at past communications. The end result is that we have made the extremely difficult decision to have another surgery to have a feeding tube placed in Barnaby’s abdomen. It will be a little port near his belly button what allows us to put food directly into his stomach.

It is a particularly difficult decision because he is doing pasaably well on nasal gastric feeds (the tube through his nose to his stomach). Our original plan was that if that worked we would forgo the surgery and try to go home from the hospital with an NG tube. 

There were two big factors that lead us to this decision, and some some smaller factors too. 

The first came from a speech language pathologist who is Barnaby’s feeding specialist at Bringham  and knows him well, she said that she expected that the surgery would help Barnaby transition to normal oral feeding sooner because trying to learn to eat with a tube going in your nose and down the back of your throat is hard and gets harder the more he grows and is increasingly astute and aware of what is going on. 

The second came from his primary nurse who said that it would be safer to have the GJ (surgical) tube at home because you don’t have to worry about the aspiration risk of him sneezing it out partially while the pump is going.  Then just last night he threw up and the tube came right up out of his mouth which demonstrated just how possible this is. 

The biggest thing holding us back was still the general fear that he might have some reaction to anesthesia. Now we have met with the anesthesiologist at children’s hospital who is going to great pains to take precautions even though they are quite sure that this is not Malignant Hyperthermia. Unfortunately that abundance of caution means that they wont do the surgery and send him right back to NICU here, they want him to spend 24 hours at the NICU at Children’s. 

Our first surgery date for Friday was already canceled because they didn’t have an open bed in the NICU for him post-op and now we are waiting to see when and if Children’s will be able to coordinate a surgery date and a NICU bed for us. Getting him all dressed up for surgery, with his feeds paused and an iv line placed, only to find out that he couldn’t go was quite the emotional rollercoaster.

Once he gets the surgery, if it all goes well, everybody expects that we will go home within about 5 days after that.  

The end of this hospital stay is in sight. Even if our hopes are gone of going home with Barnaby eating on his own, walking out the door of this place will be a great feeling when it happens.