Hello,
I’m the mother of a 9 year old boy that has had SBS since having a mid-gut volvulus (as a result of malrotation) at age 5. He is TPN dependent 3 nights per week, must get lactaided ringers the nights he is not on TPN, gets 24 hour G-tube feeds of Elecare and has an Osteopenia diagnosis.
My name is Kandace and I am the proud mother of Ty Bennett Melzer (6 months) who has SBS secondary to NEC. Ty has 30 cm of small inestine and 75% of large and is our greatest gift. We live in Florida and are looking to meet other families in and around our area.
Hi everyone,
I hope it’s ok for me to be here… my daughter has functional SBS, although she has almost all of her intestine, it has never truly functioned as it should. She was born in November with gastroschisis, and had surgery in December for a suspected obstruction, and again three weeks ago for tapering. I have been searching for families to connect with who might be able to relate to what we’re going through, and so far the only stories I’ve read that seem similar to ours are short-gut stories.
We are at Children’s in Denver and have been in-patient since she was born almost 16 weeks ago. We’ve started and stopped feeds more times than I can count at this point, and she’s been on TPN and lipids for all but about 5 days of her life, when for some unknown reason feeds were working and she was almost to full oral feeds. We were actually scheduled for discharge a little over a month ago, but they kept us because she was losing weight, and then decided she needed the tapering surgery. Since the surgery, the highest she’s gotten on feeds is about 12 mL/hr (her goal is 26 or 27), right now she’s at 10/hr. She’s got cholestasis from the TPN, her direct bili was 11.8 at one point, but this week is at 5.9, with her total bili at 8.9 (down from 6.1 and 9.1 last week), but her AST/ALT have doubled since last week.
I’ve been in contact with Dr. Puder in Boston and with Dr. Mercer in Omaha. Our GI doctor here in Denver, Dr. Soden, thinks that we should go to Pittsburgh to be evaluated and have her listed for a short bowel transplant.
I’m hoping to get some good information from this group, since we’re really just starting on our pseudo-short-gut journey…
Hello, Im Jessica mother to Ian 23months who was born with gastroschis yet at birth the bowel was dead and left him with 2/3 sm intestine and 1/2 large. He had a STEP procedure and was TPN dependant until Nov 08, currently on night feeds with his MicKey button and oral feeds by day. Im coming over from the Gastroschisis forums at Yahoo.
My son had a mid gut volvulous in Nov. 2007. He is now 19 and doing okay. Luckily he has been off TPN since last June. He has 10 inches of small intestines. He is still having trouble gaining weight and now is dealing with kidney stones. He will have to have surgery in June to remove a 2cm. stone. I hate to see him going through more surgery as all of you know. I am glad to see some new posts on this site. It helps just to hear from other parents out there.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.