One of the resources I found early after being told that Gus would need to be tube-fed for awhile was the Oley Foundation. I did a search for tube-fed children and support groups and this foundation is what came up on the results page. I'm thankful that I discovered this resource because there is tons of info and tips. I encourage you to check it out if you have tube fed child!
I noticed too that there is a section on Omegaven now. This is the new drug that has had incredible results in repairing the liver. This is huge for those people who are on long-term TPN because the lipids in the TPN basically kill the liver. I found out about it a month after Gus died. It's not an easy medication to get, but there is info at the Oley Foundation site that tells you how to actually go about it. At the time I found out about the med, it was only being administered in one hospital...now there are at least 25 hospitals who are giving it. I can't even begin to tell you how happy this makes me. TPN induced liver disease kills infants...the adults seem to do better but not by much...so to know that this med is becoming more available to small ones with short bowel syndrome really makes me happy.
I still get the newsletter because I want to stay on top of the information. Hopefully, we'll be adopting medically fragile children in the near future and I'm sure most of them will have a g-tube, ng-tube or central line. I'll be a better caregiver if I stay informed!
1 comment:
Thank you SO much for posting this. Rhett is now a tube fed kiddo, and I have been thinking of finding a support group.
How are you doing? I think of you often.
((HUGS))
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