Short Gut Syndrome Parents' Support Group
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Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Takedown and Takeoff
By: PeterA          (5:31 PM 02/01/2010)



Our son Dimitrios developed NEC at 1 week of life. He was one of four born on June 7, 2009. Dimitri had his second takedown surgery on November 12, 2009. The doctors told my wife and I to be prepared for a 2 to 3 week hospital stay after his surgery. His surgery went flawless and he was standing one day after surgery and was back with his siblings in 5 days. He went home on 13 mL oral feeds every three hours and to date is at nearly 3 Ounces every three hours along with 2 to 3 feedings of meat. This came to a suprise to his doctors, as they told us that he would only be able to ingest 35 to 50 mL orally before he would have to be placed back on an enteral pump. He has had good weight gain, despite having an infection on his finger which required antibiotics for 10 days. Dimitri has scheduled visits with an occupational therapist who recently ran several developmental tests. To her suprise, he tested at his chronological age in all areas. Dimitri does not know the phrase "I can't." He suprises every single doctor that he comes in contact with.

While he has had some bumps along the way, with his hospital stays and such, we have only focused on the positives with him (much to the suprise of some of the hospital staff). However insane they thought we were to be focusing on positives at trying times, it has played a major role in Dimitri's success.

We thank God every day for the success Dimitri has had, despite the bleek news brought to us at the onset. He is a very special child that has taught us the true meaning of strength, perseverence, and love.
Re: Takedown and Takeoff
By: Emily H          (9:32 AM 02/02/2010)
Oh I love it when we get to hear good news here!!! I am thrilled to know that Dimitri is having such success! And I'm sure you're right that a lot of it has to do with your positive attitude. Keep us updated.
Sata
By:           (2:42 PM 05/31/2012)
We were blessed when my daughters hospital sent us to Nebraska to perticipate in there IRP clinic a while after being diagnosed with Short Bowel syndrom. while we were there Sata improved tramindesly. Then we ran into a huge block in the road. Her medicare wouldn't cover for her to be seen there any longer. So i have struggled with trying to get my daughter back to the UNMC and my prayers have finally been answered. I was lucky enough to have been born into a Chickasaw family. I reached out to the Governor of the Chickasaw nation and he said he was going to get her back to UNMC and would cover all expenses from here on out. God is good.

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