FOLLOW YOUR INSTINCT! (long)
So the boys vomiting has been insane for the last three weeks, peaking at it's worst in the middle of last week. They vomit in their sleep about once every hour to once every 3 hours, and I never know which one it will be. It's a vicious cycle because it just agrivates the already severe reflux/GERD they have. The GI nurse said she thought it was a stomach virus and totally dismissed me AGAIN. I call at least once a week for the last 8 weeks asking to speak to the GI doc and beg for them to do something to help the boys stop all this unexplained sudden and random vomiting they do. I have been telling the nurse and the GI over and over that there has to be something wrong with the placement of the boys GJ feeding tubes which go into their stomachs and intestines. It's to the point that I'm not nice with them anymore and even down right nasty to them while I look for another GI doctor. (Thanks KatieH, I've got a call in to your guy.)
Well today we finally got an appointment and the GI doc hears me out about how the last 8 weeks have been and how bad they got last week through today, and the boys both vomited in front of her showing her what the bile looks like and she agreed that there must be something wrong with their tubes because medically there is nothing else she can do for them and so that's the last thing she can think of.
We rush to the radiology office at the hospital, and to make a long story shorter, I WAS RIGHT! The G tubes (the part that goes in the stomach) are both lodged too far past the stomach and in to their duodenum, and poor Evan's balloon is even lodged in their causing him additional pain and discomfort. The tubes are obstructing all the saliva and bile from passing into the intestines, which have increased because they are cutting two teeth each, and that's why they are throwing up so much.
Since the peds GI team doesn't have surgical/radiology hours today, and we refused to stay over night and are going to go back hopefully tomorrow to have them do a quick outpatient proceedure to pull the tube back out to the stomach where it should be.
I can not wait to give my GI doctor the proverbial "beeotch" slap when I see her. I'm so sick of people not listening to me.
Ladies, let this be a reminder to listen to your mothering instinct. It's always right, and if in the rare instance it's not you are only being cautious and doing the right thing. Make a stink, kick some ass! But fight Fight FIGHT for your babies! No one else will, and it seems that medical system moronic drones are less willing to help you as your tiny little baby gets older.
Re: FOLLOW YOUR INSTINCT! (long)
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OMG, L, I'm crying for you and C&E. HOW DARE THEY IGNORE YOU? I am just livid! And your poor babies. Jeez, this is rediculous!
I really hope they feel much, much better tomorrow after the little procedures.
I'm sorry you all had to go through this. We have been through dismissive drs before too. Is your pedi supportive of you? Our pedi is great when our specialists are not being responsive - she will always put in calls for us and demand answers. Its made a big difference.
Hope everyone is feeling better soon!
I wish I lived closer so I could hold down that GI doc while you knock her around a bit! I'm so angry for you and the boys!
Good for you though, advocating for them and getting yourself heard... too many doctors get caught up in the numbers and forget that there are *people* on the other end of those charts!
(((HUGS))) I hope this is the solution you guys need and the boys are on the mend ASAP!
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