Riley’s SBS care at Boston Children’s Hospital
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Riley and her twin sister Olivia were born at 27 weeks on 7/29/20. Riley was 2 weeks old when she got sick with necrotizing enterocolitis. NEC is an intestinal disease that comes on suddenly, progresses quickly, and is a leading cause of death in preterm infants. Riley’s belly got progressively worse over 5 days. She was distended, in pain, and on a ventilator. She had emergency surgery to remove all of the intestine that had died, leaving her with only a few centimeters- no more than 7% of what she should have had. Riley was in critical condition following surgery and was not expected to survive long enough to recover. We had her baptized in the NICU the next day. Her little body swelled so much that she couldn’t open her eyes (but she never stopped trying!) Riley kept fighting for her life, and showed us how incredibly strong and resilient she is.
As a result of NEC and her surgery, she now has ultra short bowel syndrome. This a long term condition that will require complex medical care in the hospital, and later at home. She currently has an ostomy and will need a g-tube and a central line, which will be surgically placed near her heart. This will allow her to receive IV nutrition through the line since she can not physically tolerate enough food to sustain her. I pray that she will eventually be able to tolerate at least some feeding by mouth (right now she takes 5 mL by mouth 2x a day, which she absolutely loves!). We will have to watch her liver closely, because while the IV nutrition helps her grow, it also causes liver damage that can be fatal.
If we are going to give her the best chance at life, Riley needs excellent care at a specialized intestinal rehabilitation center. Boston Children’s Hospital is well known for their intestinal rehab, and children with short bowel syndrome travel from around the country for treatment there. We have been working hard to get Riley transferred there, and it’s finally happening! I will be staying in Boston with Olivia and Riley until she comes home from the hospital in a few months. Going to Boston could literally change the entire outcome for Riley’s future. If you are able to donate any amount at all to help cover expenses related to Riley’s stay in Boston, we would be extremely grateful. Thank you to everyone who has prayed for our family! I will continue to keep everyone updated along the way ❤️
Riley and her twin sister Olivia were born at 27 weeks on 7/29/20. Riley was 2 weeks old when she got sick with necrotizing enterocolitis. NEC is an intestinal disease that comes on suddenly, progresses quickly, and is a leading cause of death in preterm infants. Riley’s belly got progressively worse over 5 days. She was distended, in pain, and on a ventilator. She had emergency surgery to remove all of the intestine that had died, leaving her with only a few centimeters- no more than 7% of what she should have had. Riley was in critical condition following surgery and was not expected to survive long enough to recover. We had her baptized in the NICU the next day. Her little body swelled so much that she couldn’t open her eyes (but she never stopped trying!) Riley kept fighting for her life, and showed us how incredibly strong and resilient she is.
As a result of NEC and her surgery, she now has ultra short bowel syndrome. This a long term condition that will require complex medical care in the hospital, and later at home. She currently has an ostomy and will need a g-tube and a central line, which will be surgically placed near her heart. This will allow her to receive IV nutrition through the line since she can not physically tolerate enough food to sustain her. I pray that she will eventually be able to tolerate at least some feeding by mouth (right now she takes 5 mL by mouth 2x a day, which she absolutely loves!). We will have to watch her liver closely, because while the IV nutrition helps her grow, it also causes liver damage that can be fatal.
If we are going to give her the best chance at life, Riley needs excellent care at a specialized intestinal rehabilitation center. Boston Children’s Hospital is well known for their intestinal rehab, and children with short bowel syndrome travel from around the country for treatment there. We have been working hard to get Riley transferred there, and it’s finally happening! I will be staying in Boston with Olivia and Riley until she comes home from the hospital in a few months. Going to Boston could literally change the entire outcome for Riley’s future. If you are able to donate any amount at all to help cover expenses related to Riley’s stay in Boston, we would be extremely grateful. Thank you to everyone who has prayed for our family! I will continue to keep everyone updated along the way ❤️
Organizer
Danielle Bruno
Organizer
Vincentown, NJ