GI update ... "smarter" than the docs but not smart enough

Friday I called the GI and said that the ER doc called Dr. X and he said Manny needed to be seen that day. I was willing to see any of the docs besides the one we have been dealing with. Ironically, the only doc available was this Doc who has ignored THREE of our emergencies. I have had to figure EVERYTHING out by myself. We'll call him Dr. K.


So I buck up and say I'll take the appointment with Dr. K. Before I left, I wrote out the history of the 3 emergencies that we'd had with the baby. Two of them involved no food being able to go into his gtube (and he can't eat by mouth so this is a true emergency). I wrote out what I had done (including calling the office, etc.) and how it got resolved. (Never did their office call me back ... I got it all done by mother's ingenuity.)

As I sat in the office, I was sweating. I hate confrontation SO much. I decided that we needed Manny treated first, then if it wasn't handled to my satisfaction, I would give him the letter and a copy to the front desk to send to the head doc.

Dr. K came in with a medical student. He asked what was going on and I told him about the bleeding, the pain, the retching, etc. He asked a few questions and decided it was ulceration of his stomach lining. He upped his dosage of Prevacid (acid reflux meds). And he wanted to put him on this ulcer med called Carafate.

I asked him what I should do in the event of another emergency. And he was not understanding that I was saying I couldn't get through to HIM. (I think he's a little blonde.) But he told me to be a squeaky wheel. He told me that the times I described were true emergencies and that I needed to be persistent until I got it fixed. (sigh)

He changed out Manny's gtube to a newer one. The old one was in for 7 months (usually last about 6). It was a little low on fluid so it might have been moving around and causing irritation.

As I got home, I spent the time wrapping my brain around it all. And I realized. DUH. I know what's causing the ulcerations. And I felt so stupid!

Remember how back in July how he got horrible cellulitis and went septic and they gave him a 50/50 chance of surviving? Well ... I thought at the time that he must be allergic to his gtube. So I started putting a little gauze strip under his tube. Problem solved. I even checked it one day and sure enough, when the gauze was gone, a rash immediately showed up. And I put all this in the back of my head a "problem solved".

When this blood happened the other day, I didn't connect the dots. And then it hit me, he's allergic on the INSIDE of his stomach too! Duh. I guess the stomach acids just protect it some so it's not so bad.

Then I remembered back how this has happened 2 times before. The last 2 times there was no fresh blood, it was what I thought was old milk. Brownish milk. But I realized, it was milk with blood clots! And with both of those episodes, he would scream for nights and days (about 3-4) before it would have this gush and then he would have relief.

This has been going on about every 3 months since he got the button. The reason it was fresh blood to go with the old blood was since the button was loose, it moved more and caused more irritation.

I feel horrible!! He's been in pain this whole time. I wrote a group of people with gtubes and one lady says when she had the wrong button, it caused skin breakdown on the skin but the pain inside was WAY WORSE! My poor baby.

So ... tomorrow, I'm going to talk to my pediatrician and see what we can do about this.

As I diapered him today, I noticed a foul smell coming from his gtube site. And he winces if his tube area is touched at all.

So I feel great that I figured this out before the doctors. But I feel stupid that it took me this long.