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Our little warrior is 6.5 months; he had been able to get down to high flow/low for about three and half weeks, but then his body just kinda had too much and he had to go back all the way to NIMV. Right now his fi02 has been hovering high 60s. He’s been on steroids and today they’re going to give his some lasix and diuril to see if there is a build up of fluids in his lungs; however, doctors are getting to the point the point where they said we might have to start looking at a trach. It is something we were hoping he didn’t have to go through since he already had a hernia repair and gtube surgery. So I guess my question to trach parents is- how did y’all emotionally prepare and do you have any advice? It’s hard to think about caring with his with both a trach and a gtube, but we want to do whatever is necessary for him to get better.
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