Well, the reduced vomiting thing was short lived. Grayson has woken up the last two days puking, despite the farrel bag and elimination of the medicine I thought was making him sick. Then tonight right after his bath, even before I could get his diaper on, he started retching, screaming and vomiting, and it felt like forever before I could get him to stop.
We saw the GI doctor this morning. Unfortunately, we got almost nowhere. And I like this doctor, I really do, but I was really frustrated with him today. When I told him Grayson has really been struggling since his procedure, he had no idea what procedure I was talking about. And there was no mention of the multiple calls I had made or the conversation with the on-call doctor I had last week. I get doctors have a lot of patients and a GJ placement probably isn’t that memorable to a doctor, but come on. At least look at his chart before you come in the room to jog your memory!
Even though Grayson has not vomited any formula in a month (thus getting more calories, right?), he weighs the exact same amount as he did before he got the new tube! I just don’t understand that at all, but we are going to gradually increase the rate of his feed to see if that gets him to gain some weight. As for the continued vomiting, he offered no real explanation or solution. His reasoning is this is all about G’s lack of motility, so he wants to put him back on the same medication he’s been on three times before (and really made no difference). He’s also putting him back on Prevacid to reduce the acid in his stomach.
I’m thinking about making an appointment with another GI, just to get another opinion and maybe some different ideas. I hate dragging Grayson to even more doctors, but I feel stuck where we are with no real hope of things getting better.
Then in the back of my mind I remember Grayson’s diagnosis. A disease with no treatment and no cure. Am I just getting upset at doctors when really there is nothing they can do? I just wish more doctors seemed more invested in my child, in what we go through every day. I wonder if they even think about Grayson in the weeks between his appointments. Today, a therapist Grayson worked with over a year ago came to visit him, just because. This therapist filled in for G’s regular therapist when she was out for a surgery, maybe 6 weeks. She was a sub, and yet, she checks in with us every few months and came to see Grayson today.
Sometimes I wish his doctors acted like they cared so much.