Biliary Atresia or babies who have had extended hospital stays

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NYMommy04's picture
Joined: 09/19/03
Posts: 281
Biliary Atresia or babies who have had extended hospital stays

A friend of mine has a baby with Biliary Atresia. She is 3 months old and living in the hospital awaiting a liver transplant. Anyways, her father asked me how to deter her from pulling out her feeding tube and ivs. When Jessica was in the nicu, she did this too, but was much younger. I suggested mittens or socks for her hands.

Anyone else have some suggestions? Also has anyone ever gone through this sickness and offer some words of support I can pass along.

link to their blog..

http://cordeliafaith.blogspot.com/

Joined: 11/28/06
Posts: 848

I really don't have any advice, as I've never been through anything like that. But what a beautiful little baby with such an elegant name! She and her parents will be in my prayers!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I actually don't have any advice either except for socks (that's what they used for Eli and some others kiddos). Eli never needed the socks for very long. He didn't pull his feeding tube or IV's out. Even at 2 1/2 and 3 1/2 he didn't. He was NOT a happy camper but he doesn't pull anything out. In ICU they have restraints on them. I don't think they would do that with a 3 month old though.

jgriffith's picture
Joined: 08/20/10
Posts: 420

For ng tubes, we have had a lot of success with tape. Enough tape that she can't get her fingers under the tube. A piece lengthwise and multiple longwise over it. For IVs covering the tubes is really important. I use a long sock with foot cut off to cover her PICC line. A gown to cover when her port is accessed. Stiff IV wraps also work. [/IMG] out of sight out of mind!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

One of my special needs mama's mentioned this on FB so I wanted to post it here too. For IV sites they suggested baby legs over them instead of the netting. I never would have thought about it but it's great and would be reusable for cuteness.

jgriffith's picture
Joined: 08/20/10
Posts: 420

We used baby legs, and my mom made some sleeves out of flannel. They worked like a charm.

aimee05's picture
Joined: 10/17/05
Posts: 111

I never thought of baby legs, thanks that's a great idea.

And I pray for your friends daughter.