Whopper of a concern not sure if anyone might have an idea on this but we're [my wife and I] concerned as we can not seem to find a pediatrician or hospital that can provide a specific diagnosis to issues with our Daughter. While she does have an array of medical issues we've run into too many road blocks with attempting to discern what to do at this point to help her.

Our Daughter is a CHD Baby with HypoPlastic Left Heart, second stage surgery completed. She did experience neurological trauma between the first and second surgery from cardiac arrest, the determined "affected areas" were in regards solely to motor-based movements & Hand/Eye coordination. She has not otherwise experienced any additional "damage". She is currently six months old and still facing undetermined medical issues. She has been through two bouts of gastroenteritis based virus's and dehydration despite our efforts to prevent this she continues to experience it from time to time (in one case a direct result from a medical decision from our local hospital).

She was recently discharged from another visit to the hospital due to a breathing concern to find out that [after her second surgery] her vocal cords (left) was paralyzed and we are under the understanding that this is why she is having what was classified as "breathing issues". She also was "diagnosed" with a upper respiratory infection and needed to be nasally suctioned daily. She was released under the belief that she no longer had any virus/infection and has gone home on a continued array of medications (Lassix, Zantac, Phenobarbital, Hydrocortisal, Aspirin, Simethicone & Adavint). At this stage she is currently unconsolable for periods lasting anywhere from 30 minutes to upwards of 12 hours. She has a great deal of frustration flatulating or producing a stool (for the first 24 hrs after discharge she did not produc a stool); her cries displaying she is in extreme pain but the experience can pass or subdue into a moderate cry. We believed she may have been constipated but has since produced regular stools but still has difficulties with them. She will also awake from sleep as if frightened, crying for long periods without showing any other signs of distress. She is going through minor teething as well, we have tried numbing/teething agents (Orajel), along with Tylenol. The Adavint she is on is also supposed to "calm/subdue" her but is now having little to no effect for the most part. She is also on a continuous drip of Neocate (standard mixture 20cal)

Overall:
She does have periods where she interacts as a normal six-month child, plays, coos, etc, but for minimal periods inbetween crying. Between her Adavint, Tylenol, scheduled Orajel, Simithicone, we're having trouble discerning what would still the potential problem. Especially with the hospital stating she did not have any existing stomach or respiratory issues remaining. We had at one point considered Collic as a possibility but her crying is far to constant and many of the medications she is on combat against this.

We are lost