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Saturday, April 03, 2010

miss me? :)

Let me start this update by mentioning that with our recent change in respite care qaulifications, We have found a nurse who can work with Hannah for up to 20 hours a week. This makes me sooooo Happy!!  For 1, I have 3 other children. 2, I have my own medical issues that I have been neglecting 3... well you get the point.
 Hannah received her DX of Autoimmune Enteropathy after our visit in Cincinnati. It has been almost a year, and I am utterly shocked to still realize how rare and "still being researched" this desease is. I have, through a Facebook group page ( Hope 4 Hannah) found a handful of Moms from all over the world, that have children with this and are struggling for information just as much as me. In search of some kind of support group, realizing that the few of us maybe our only support group! I find how much  it is needed when the doctors skirt around issues, because they just don't know. Issues like being on an anti rejection medication forever (Tacrolimus in Hannah's case) which is comparable to receiving chemo, is the only treatment for this desease.
For the last 2 years, Hannah has been home schooled. She has not been able to eat for a year, she has a central line and is fed Tpn 24 hours a day and has formula feeds running through a J- button. The doctors have been battling keeping her prograf levels stable, and slowly moving up her feeds so she can stop the TPN. but now she has gastritis and an ulcer in her tummy from the bile back up. She continues to throw up at least 3 -4 times a day, mostly during med time. We have had numerous issues with her central lines! Broviac were just not Hannah proof and she would wear a pinhole in them constantly, we changed to a purple power line, which is resiant to breaking. That has worked well, but her chronic line infections have not fixed the need to pull and replace these lines constantly. they say she is multivisceral transplant canidate. so salvaging these lines are the prime concern. They believe her intestines are leaching bacteria in her bloodstream (like a colander) and setting up a home in her line.
When we left the hospital last week they told me her Bard polyurethane purple power central line was not compatible with an ethanol lock. But Thursday the Doc said she consulted with the other Docs on the other side of our huge planet. So Monday after her IV antiobiotics stop, and starting prophylactic ethanol lock therapy for 2 hours a day. yes, I will be injecting gas into my lil girl! WHAT NEXT! Which (like everything else Hannah deals with) does not have alot of literature on. So we are praying this works! and does'nt eat up the line in process!
She also has had issues with low hemoglobin. She had her second blood transfusion on the 19th, and last week it was running low again. As hard as TPN is on her organs, We have seen what putting nutrients into hannahs body enternally has done for externally. she has went from 30 pounds last year to 50 pounds currently, As well as put on a couple inches, She has grown all her hair back, She looks healthier now then when she was a baby.