My son was diagnosed with Tetralogy of Fallot at 2...

My son was diagnosed with Tetralogy of Fallot at 22 weeks. Due to his condition it was determined he had to be delivered at children s. After delivery he had a breathing issue and was transferred from the amazing CICU to the horrible NICU. I do bot have the time to detail all the issues we encountered in the NICU department but it highlighted all the issues parents should never have to deal with. Every two weeks the team would change. Every two weeks when the new team came on board they repeated every test our little guy previously had. He has had genetics done 4 times because every team said their test would be better, all came back normal. Not once did any team look at his records. I do not know how many tests I had to decline and fight about because he had already received them and the team was ordering the test without consulting his chart and seeing what tests had already been done. Communication between departments was horrible. At one point the CICU had to come up and show the Nicu docs like they were in elementary school what the issue was and how what the Nicu was trying to say where huge issues where what was to be expected with his condition. The nurses were all over the place. Some were fantastic, some just wanted control and wouldn t listen or compromise with parents. If you have a complex kid, stay out of the Nicu here because they do not know how to deal with those cases and properly consult and listen to the appropriate departments. When we were close to discharge and they told me it would be at least 3 more weeks I demanded that my son be transferred to the CICU. Once I said that demand it came out that they had not been consulting cardiology at all about discharge and were just doing what they wanted and they finally agreed to see what cardiology wanted to do. We were discharged 4 days later. The CICU seems great and I will edit this after our experience in there.