December 17

We were discharged Monday to stay local. Angelica and I moved back in with family. It has been so nice to no longer be in the hospital.  Angelica is still with the NG tube to help her complete her bottles. We can have it removed once she completes 80% of her bottles for a few days. Otherwise we will have to go to a more permanent solution, gastric tube. we would prefer her to complete her bottles but know that her growth is very important for future surgeries. Angelica started having stomach issues again and was not taking the high amounts of the bottle she had been taking in the hospital. We followed up with surgery on Friday and revisited with the dietitian. The dietitian wrote the incorrect amount of high calorie formula for Angelica to be taking. So she has gained weight but poor thing has been having tummy problems from highly concentrated bottles. the surgeon wanted to re admit us due to possible peritonitis. However Angelica's fussiness had surprisingly decreased the day before. They consulted pedi cardio and we were told as long as labs are normal we can go home but would need to stay local.  Angelica had a bit of a rough night. You can tell she is having stomach pain. Praying that once we get past  this she will excel at taking the bottle once again. We have a follow up with the surgery team Monday and follow up with pedi cardio Thursday. We are hoping we get the okay to go home after Thursday. I felt the formula seemed high but trusted the dietitian would not mistaken something so important. I cannot stress enough to be your child's advocate. If you feel something is off speak up. I wish I would have spoke sooner however had I not said anything this would not have gotten caught and Angelica would have had serious complications. The surgeon wanted to admit her because he stated heart babies cannot take infections like other babies. I appreciate the surgeons recommendation however I felt clinally she is stable x Ray showed abdominal distensión and increased bowel but she was not showing any signs of being sick. I truelly felt admitting her would only be a step back at this time. This is were we compromised to do lab work and follow up if necessary. As a practitioner I know mistakes can happen and the dietitian apologized. As a mother I have realized to trust your instinct and don't be afraid to question your caregiver.