Back to Primary’s - Troublesome Feeds

We brought Crew back up to Primary Children’s Hospital yesterday afternoon because for the past few days he’s been having a very hard time with his ng tube and pump. About 5ml into his feeds he would start being inconsolable and would writhe around in pain. We’d have to stop the pump, give him 5-10 min to calm down, then try again to only have to repeat it over and over.

Lindsay’s face last night while holding Crew in the ER speaks to how we’ve felt about his feedings lately

The ER dept took X-rays of his abdomen and everything seemed to look fine. We met with three doctors from the Pediatric Surgery team and they confirmed that everything seemed fine with his omphalocele, and that the X-rays showed no issues. They said an Upper GI could be done to make absolutely certain that nothing was blocking, even though everyone (including Lindsay and I) were fairly certain it would find nothing since Crew has regular poops.

As expected, the Upper GI didn’t show anything, but it did confirm what Surgery was expecting - Crew has malrotation of his intestines. His stomach doesn’t face the normal direction and his small intestine coming off of it also heads in the ‘wrong’ direction. We also could see the contrast used for the images being refluxed up into Crew’s throat… He hadn’t eaten in about 10 hrs by the time they took him for the Upper GI and so his stomach was completely empty when they used his ng tube to syringe in 8ml of contrast. You could see it go down the ng tube, fill out in his stomach, then almost immediately reflux back up his throat to his mouth. Yay.. Plus side of that is that we now have X-rays showing him refluxing! Haha - no more doubting from anyone about Lindsay and I telling people how bad it is for Crew.

All of the staff of course make comments about his acrobatics to try to get relief. This was taken today.

They admitted him to the infant floor right after the Upper GI was done, and he was able to eat shortly thereafter. Luckily Crew started having issues with the hospital pump as soon as we turned it on and so they could see what we were talking about. Crew is admitted for at least a few days this week so that they can try to chase a good med to help with his reflex and also monitor his feeds to come up with other ideas than what’s been offered to us by everyone else that we’ve met with. We may try building off of what they’ve already had us do, or change entirely. An nj tube also isn’t out of the picture, but it seems like that would be a later thing if we can’t work out ng feedings better.

No real answers yet, but hoping and praying for a solid outcome from this so that feeds will be easier and we won’t have to come back to Primary’s until his O closure in the future. 🙏🤞