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raeanneb
Joined: 22 Jan 2009
Posts: 4
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 Posted: Wed Jan 28, 2009 2:58 am |
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It seems like all I read are gastro stories where the babies just get better and go home, sometimes in a month or less. We're going on 11 weeks now, and our third suspected blockage. This time we were at full feeds and were actually supposed to go home last weekend, except that she lost weight, and they wanted us to stay until she gained 2 days in a row. Now she's NPO again, having her third upper GI/small bowel follow-through in the morning. She also has cholestasis (liver damage) from the TPN. The doctors and nurses here have said that it's typical to take awhile and quite a few tries before feeds are successful, but it doesn't seem like any of the other stories I have read were like this.
Is there anyone else who's had as difficult a time as we have??
www.faiths-place-08.blogspot.com |
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Claire F
Joined: 18 Jul 2008
Posts: 35
Location: Bristol, England |
| Posted: Fri Jan 30, 2009 1:57 pm |
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Hi,
Your story sounds very similiar to my daughters. Liberty is now 4 but we went through 4 months of her being in hospitial before she came home. She had a silo for 2 weeks then wouldn't tolerate feeds, had 3 blockages, high blood pressure, a stoma, a rash, liver damage, and suspected appedicitis (spelling!!). She also had 1/3rd of her bowel removed, lots of scare tissue on her bowel and then her wound broke down, I lost count of how many long lines she had in the end to!
She was in for 4 months at first came home for 3 months and then went back in for another 4 months because her bowel had blocked again. After this she then would not gain weight and had stomach ulcers - finally at the age of nearly 4 she was discharged from the surgeon.
Liberty was a really unusual case we were told at the time as she took so long to recover and get well, and it used to make me jealous to when I read the stories of babies going home quickly, but they are all different and I was just grateful she came home because at one point it looked like she wouldn't.
Hang in there and Liberty is a joy now - very strong willed etc but worth all the hassle,
If you want to PM me then feel free,
Claire
x x x
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Mum to Liberty born 8th May 2004 with Gastro and Bailey a very lively 7 year old |
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