Remy has been having distention in her bowels since she was born, in the beginning of her life she was tested for everything, from NEC (ecrotizing Enterocolitis) to Hirsphrung’s disease. Nothing was found and her bowels were assumed just premature. A rectal biopsy was done and nothing surgical was found. Then she got septic. As you all know Remy has been sick for some time, and has progressively been getting better. She has still been having lung and gut issues, along with seizures. She is 40 weeks now and if she would have been a healthy baby, would have been home by now.
Last week Remy had a CT scan on her lungs and intestines to look for something we have been missing. After the scan Dr. Ginsburg, a very well-respected pediatric surgeon saw calcifications around her intestines. These were most likely caused by a perforation in her intestine which eventually healed itself. Ginsburg decided to do an exploratory surgery to check for a narrowing in the intestine where the perforation healed. She was also throwing up and releasing a ton of dark green bile through a repogle tube that goes from her stomach up through her mouth, a clear sign of intestinal problems. These issues could be what is causing Remy to be so backed up and swollen. So of course we agreed yes, let’s do exploratory surgery to see what we can do.
Over the weekend Remy remained stable, awaiting Monday’s surgery. We were worried she would get worse and either have to have emergency surgery or not be stable enough to have it on Monday. I had to work and it was very difficult being away. I was able to stop in for a very short time during the surgery, but my mom and sister came to the hospital to be with Mary. The good news is Remy did great. She is incredible and awesome and every great word you can imagine. Remy did in fact have a lot of dead intestinal tissue. Dr. Ginsberg removed 40 cm out of 120 cm of her small intestine. Which leaves her a considerable amount to live with. He explained to Mary that it could either have been NEC or a Volvulous, both in which the end result is dead tissue. We will never know the cause, or which one it was, but she definitely had one of them.
The healing process has begun. She had a tough first night. She struggled urinating, keeping her blood pressures up and is back on a high frequency ventilator at very high settings. She is swollen again, they are pumping her full of fluids again to make sure she doesn’t dehydrate. The second night was a little better. She is more swollen today and cannot open her eyes but this is expected. This is going to be a long, slow process. She will get better, she has to, but we have been warned she can get worse again in the process. She is in the beginning of a long healing process. She will be sick for a while, but when she does begin to get better we can hopefully get her lungs better, extubate and begin to feed her. We still don’t know what the long-term effects of all of this will be, but we will stay strong and take it day by day.
In a few days she will have a bag colostomy bag attached to her. This will catch her poop while her intestines heal. She will have this bag for at least 6 weeks and maybe longer. One of the major concerns is that her Illocecal Valve, which is the valve that connects her small and large intestines, is very fragile. She needs this to heal or it could cause problems in both the short and long-term and would affect diet and bowel movements. Her lung is still a big concern as well. She has a cyst, rather a large pocket of air, that we hope will go away but instead has grown. Another concern is that she has required steroids to help her through all of her challenges. The steroids can interfere with her healing process. Weaning them down is necessary, but also a test of how well she can do without the steroids. She is back up on her Dopamine. She is on antibiotics, Zosen and Vancomysin. The seizures have been kept under control with heavy doses of Phenobarbitol and that will continue until she is in a stable enough state to be able to focus on that. This will be a while from now. She is very critical again, but stable.
In many ways Remy is back at square one. She is worse off than she was from the day she was born. In other ways she has progressed and we are astounded by her great resilience. Her surgery was a success!!! We hope that this discovery and correction in her intestines will help improve her overall health rather than diminish it. We still have a very long road ahead. While its easier said than done we do our best to take it day by day. We are so thankful and lucky to have the staff that we do. We thank you so much for loving Remy and for helping her get better. It truly means the world to us.