On Monday Owen had an appointment at Stanford to get a second opinion about Owen having the S.T.E.P. procedure done. If you don't know, the S.T.E.P. is a procedure done to attempt to lengthen the intestine. Our doctors have been on the fence about it for about a year now. One doctor thinks he absolutely needs it. Another doctor thinks he needs it but is not completely certain about it. So, we headed to Stanford for another opinion.
The doctor we saw in Stanford was actually Owen's doctors attending when she was still learning.
We were very impressed with our experience at Stanford. The GI doctor had a lot of knowledge. You could tell he had been a GI doctor for many many years. He does not like the S.T.E.P. like many other GI docs do these days. He thinks it is a good procedure but he agrees that it is not a cure-all type of surgery and other steps need to be taken before leaping into surgery.
After reviewing Owen's history and discussing it with us, he concluded that Owen has many other options before surgery is a neccessary one. Of course we were super excited to hear this news! However, we were more excited about the rest of the meeting. The meeting was about 2.5hours of pure information and help :) He gave us many options to help improve Owen's care.
First, Owen is on a couple medications to help with his bacterial overgrowth in his intestine. (Owen has parts of bowel that are dilated which creates places in the bowel that don't move very fast. This creates "pools", for lack of a better word, of food or formula. This is where bacteria feed and multiply . Bacteria creates gas which worsens the movement in the bowel.) The GI doc believes we should change Owen's medications to better control the bacteria that is growing in his intestine. He suggested that we do an endoscopy which would give them a chance to test the bacteria that is growing and find a better medication.
This was very exciting to me because I can tell when Owen needs his medication to control the bacteria. His belly gets extremely bloated, he gets gassy, he poops more often and thows up more. Hopefully, if we can get him on the right medication, this will not happen as much and we will be able to increase his feedings and maybe soon go to some bollus feeds.
Second, the doctor suggested that we change Owen's formula. He is currently on Neocate infant. This formula has done well for Owen. However, the Neocate junior has a prebiotic in it which promotes healthy bacteria growth. This could also help with his gas, soupy poop, and throwing up. I am pretty excited about this!
Third, currently Owen is on 3 in 1 TPN which means that the TPN and Lipids are pre-mixed by a pharmicist in one bag. He believes that having the TPN and lipids in one bag can create problems. He said that mixing TPN is hard to do when lipids are clouding the look of the TPN. So, we are now doing 2 in 1 TPN with lipids in a separate bag. He said that taking the lipids out has also shown to keep the line patent longer. This is great for Owen, but it does mean he will have yet another pump at bed time.
He had some other suggestions but we stuck with changing those three things first. If you change too much at once you won't know what is helping and what's not. Stay tuned to see how all these suggestions help Owen :)