Waiting2Post

First, awesome job with this and sincerely sorry for everything you have gone through.

One part I’d like to hear more on is what you all are doing or planning on doing for the mental health and guidance for parents that get thrown into this situation? As someone went through a portion of this (not the same sickness or horrific outcome you had) with a child, we felt completely unprepared. We learned a lot while living at the hospital for months and would do many things different in the future.

To me, a guide on what to do as a parent new to hospital life under such sever circumstances would have been helpful

Great to see you turning something so sad and negative into such a positive. Kudos to you both

Those are all very helpful. I have one more question if possible. What is one thing you would tell a parent who had a young kid stuck in the hospital for a duration of time that you wish you knew prior to being in the situation yourself?

It could be simple, like get out and go to dinner with the other parent. Sleep at home x number of days a week. Take notes. Advocate for your kid. Consult other hospitals. Don’t leave the hospital if you don’t want to. Read to them. Etc