Tuesday, April 28, 2009

Finally, some answers!

So the boys vomiting has been insane for the last three weeks, peaking at it's worst in the middle of last week. They, especially poor little Evan, 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 aggravates the already severe reflux/GERD they have. 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. Last week at it's worst the GI nurse said she thought it was a stomach virus and totally dismissed me AGAIN and our GI told me personally over the phone that they couldn't be dehydrated because the feeding pumps would make sure they get enough fluids no matter how much they throw up. But the very next day after we gave Evan some Pedialite in his formula (thanks yet again to Sweater who's son Jax is going through the same issues) we saw an immediate improvement and think that things could have gotten very dire had we not pushed the Pedialite issue with the GI nurse. It's to the point that we are not very nice with the nurse and GI doctor anymore and especially not to U of MD Hospital System.

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. 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.

The only thing left to do is make sure there isn't a problem with the tube. We rush to the radiology office at the hospital fourty-five minutes away, and to make a long story shorter, it turns out I WAS RIGHT! The G part of the tubes (the part that goes in the stomach) for both boys are lodged too far past the stomach and in to their duodenum, and poor Evan's balloon is even lodged in there 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 procedure to pull the tube back out to the stomach where it should be.

We are discussing the option to try feeding the boys through the G tube port for a few times to see what happens after all this is fixed and possibly even removing the GJ tube all together and replacing it with a basic G tube. On the one hand it seems easier to just use the G port on the GJ tube, but it is less successful to do that because there is already a necessary obstruction by the J port of the tube that we currently feed them through. The GI is suggesting that because they are willing recently to have some foods by mouth despite the increased vomiting, they may be ready to go to feeds through the G port. I have my doubts and am very concerned that this may fail and we'll find ourselves back in the hospital having another GJ tube surgery with general anesthesia. But on the other hand it would be devine to move to the G tube feedings because it means we are just one more step closer to getting off the feeding tubes in a year.

Recently we've had some major success (just yesterday and today) with the BeachNut Stage 2 Applesauce and Oatmeal mix in a jar. The boys have been all over it like hungry baby birds eating more volume than ever before. It beats Bananas by a mile! I'm hoping that we can keep this winning streak in our eating adventures going so I'm going to also try the Blueberry and other finer Stage 2 foods. Technically we're only supposed to be doing Stage 1 purees but the applesauce and oatmeal mix is really thin and I think some of the other Stage 2 foods might be more enticing.

Another bonus to our eating success is changing spoons. We were always feeding he boys with the Gerber rubber coated spoon, or the Nuk nubby toothbrush, or by our finger. Recently we started using the Gerber Take n' Toss spoons and for some unknown reason the boys open wide and are using their lips to scrape the food off the spoon. It must have something to do with the kind of plastic or the hardness or the smoothness of these spoons. They are also a little deeper than the Gerber rubber coated metal spoons which is a more "advanced" spoons to learn to eat from for oral aversion stressed kids. I'm sure than the two bottom front teeth the boys have coming in are also encouraging the improved eating behavior, so I'm trying to take advantage of it where ever possible.

We're all running on very little sleep around here so if this is rambling I'm sorry.


ivory and jamie said...

YAY, YAY, YAY!! I am so glad that you finally have some answers. I can't imagine how pissed you must be, it breaks my heart to think of those boys in more pain :( I hope tomorrow goes well and you continue to have success with solid food!

cd0103 said...

Aggh-- Are there any other specialists in your area, because darn it these people seem slow to catch on.

Claire Green said...

OMG! Yay for some answers!!!!

Martha Compton said...

Mama's know best, don't they?! I'm glad you got some answers and things are fixed soon.