For the past two weeks every time Alex eats, whether it's a tube feeding or an oral feeding, she winds up crying and rubbing her g-tube incessantly within 15 minutes of finishing her meal. It's gotten to the point that she's actually screaming with huge crocodile tears and is clearly extremely uncomfortable. I took her today to the Gastroenterologist to see what was going on. They sent us to x-rays to see if she's 'backed up' since she has a long history of constipation - the x -ray was good (which I wasn't surprised considering the poor thing had to have an enema last night - the true joys of motherhood with a special needs kid, let me tell you). They took a culture of her g-tube site to make sure there is no infection, which I seriously doubt since her g-tube site looks good (we ALWAYS get comments from doctors on how she has the best looking g-tube site they have ever seen) - she has no drainage from it and it's not looking angry, so I'll be really surprised if that comes back with anything. Next step is to wait for radiology to call me tomorrow to schedule her in for a gastrointestinal series where they will shoot barium through her g-tube and watch to see how everything is moving through her intestines and make sure there is no blockage.
Have I mentioned in the past that Alex being non-verbal is probably one of the hardest parts of dealing with all of her medical issues? I hate that she can't tell me what's hurting. She is such an amazing trooper with all she has to deal with.
Have I mentioned in the past that Alex being non-verbal is probably one of the hardest parts of dealing with all of her medical issues? I hate that she can't tell me what's hurting. She is such an amazing trooper with all she has to deal with.
3 comments:
Donna we hope Alex's tummy feel's better soon! <3 We are praying for her every day! Good Luck with the walk this Saturday. I Wish we were there! Love Your Cousins April, Jeff, Ciara, and Patrick....We Love So Much XOXO
Oh no! I hope it's a simple fix! Poor Alex! And poor you!
I'm so sorry to hear about Alex's tummy woes. I hope you are able to resolve the issue soon.
I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.
Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.
Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
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