6month old granddaughter with CIIP

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deeree
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/23/2007 1:03 PM (GMT -6)   
Hi,
I just found this site after researching for days on end about chronic idiopathic intestinal pseudo-obstruction.
My 6 month old grand daughter was just diagnosed with it. She has been in the hospital almost 2 months now of her little life. She was born with distended abdomen, kidney nephrosis, & bladder distention. I thought for sure she was going to have MMIH, but the Lord must have heard my prayers. She was breast fed, but kept getting progressively worse in the first 3 months. She looked like she had a basketball in her stomach. She has had an ileostomy, and they tried to feed her orally again, but she still cannot hold down the formula. Today they are putting an NG tube back in and on Friday they will be giving her a permanent feeding line in her shoulder.
I am just looking for any info I can get trying to cope with all of this. The articles I read are all morbid, with children dying by the age of 2 or less. At this point, I have to continue to put all my faith in the Lord, because everything they have tried doesn't seem to help.
If anyone can give my any insight on this, I would be forever grateful. I just want to understand and be able to help if I can, so hearing real life stories instead of doctor's journals might not be so depressing. Thank you all.
deeree

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/23/2007 1:52 PM (GMT -6)   
Wow. I don't have much info - I had Ulcerative Colitis, and that's why I had my ileostomy. But I do want to say hang in there, and that I hope she's okay - what a lot for a tiny baby to go through, poor thing. She'll be in my prayers.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/23/2007 8:59 PM (GMT -6)   
i don't have any info for you either, i really wish i did, but i do want you to know that i will keep that little darling in my prayers.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/25/2007 5:28 AM (GMT -6)   
deeree,
What's your little granddaughter's name? I've been praying for her and have been asking the Lord to heal her. I know that He knows her name, but I just wanted to ask so that I could say her name in my prayers.

How is she doing? Please keep us updated. Is your name Dee? Is she your daughter's or son's child? I've been praying for all of you, and I know that God knows who you are, but I'm just asking for me.

Thanks, and please take care.
Cecilia

deeree
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/25/2007 8:04 AM (GMT -6)   
flchurchlady, My granddaughters name is Layla. She had surgery yesteday for a JG tube and a permanent line in her shoulder for parenteral feeding if she can't do enteral. I am still waiting to hear from my daughter on how she is. Thank you all for your prayers. I need those more than I do information. My daughter and her husband have had tremendous fortitude about this, taking one day at time. My daughter doesn't let anyone see her cry, and she keeps saying everything is fine when it's not. It almost seems like they are in denial. My daughter, JB, has been at that hospital the whole time, coming home only to take a shower and feed the dogs. Hopefully, as time goes on, and healing takes place, she might be able to eat orally. I can only pray, for it is truly in His hands now.
Dee

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 10/28/2007 4:59 PM (GMT -6)   
Deeree:

We are praying here in New York for Layla, you and your family. God bless you all.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.

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