Pediatric Gastroenterologist

Today, Friday, April 24, Caden finally had an appointment with the pediatric gastroenterologist. I had been waiting a couple weeks for a referral to go through and for them to have an available appointment. I was so happy to know we were going in today. And, I was hopeful that she would be able to put in a new Mic-Key g-tube since we had been stuck with the foley catheter since Tuesday's ER visit. I REALLY didn't like using the foley. It was so much more complicated to do feedings and give medications, etc.

I immediately liked the doctor from the moment she came in the room. She was easy to talk to, and she clearly took my concerns seriously. She had one of her nurses come in and put in a new g-tube. It is slightly smaller in diameter than the previous one he had, but that's okay with me. I'm just thrilled to have the Mic-Key button back!!! She told us that it seemed there had been a bad “batch” of g-tubes manufactured because she had patients who had had g-tubes for many years coming in saying theirs had come out. So, it wasn't just us. It really did seem they were defective. Makes me feel a little better, like I wasn't doing something wrong. But I still wish we didn't have to go through it at all!

We talked about scheduling another swallow study and she agreed we needed to do that as soon as possible so we could transition to oral feedings and get rid of the g-tube altogether. She said she could schedule it locally but it often takes a couple months at least and they just don't do them that often. Her preference is for us to do it at Stanford so it looks like we'll be going back over there. We had another appointment scheduled for May 19 at LPCH so she was going to try to schedule it for the same day so we don't have to make multiple trips.

We also talked about the formula we were fortifying the breast milk with. We have been using Enfamil because that is what the hospital used. The GI doctor wants us to switch to a different type of formula (the name is escaping me right now) which she feels will be more easily digested. She said her office will arrange that with Apria Healthcare, our home medical supply company. So that will be nice. We definitely want what is going to be digested more easily because it will hopefully mean less gas issues for the poor thing!

We also talked about doing another video scope of his vocal cords but that hasn't been set up yet. She said if they do it in Sacramento, it will be done at Sutter Memorial Hospital and they like to put them under sedation to do it. So she thought if we had any other procedures that needed to be done under sedation, we should try to coordinate them to happen all at the same time. Anyway, we will see what happens with this. We see her again in a month and she told us if we had anything come up in the meantime, to let her know or just come into the office. Now, we will see what the pediatric surgeon says next week when we meet with her.