On June 14,2018 Nevaeh had to get a tracheostomy, she was not able to come off of the ventalator/ breathing tube. She had two failed extubations (removing the breathing tube) before we all came to this conclusion. We also gathered some data to make sure there was nothing else that was stopping her from being able to come off the vent. And everything led back to her diaphrams. During any type of open heart surgery there is a chance that the diaphram or the nirves near the heart can be damaged during the procedure. In Nevaehs case it was bother of her diaphrams, her doctors stated that it could be up to 6 months or more before the function returned. But if she were to stay on the vent her lungs would become deconditioned (not as strong), so our only other other option was to give her a trach and let her grow and develope during that time while coming off of the vent support. We have not heard our sweet girl talk sense before her transplant, she was calling her mom "dada", it was the sweetest thing. Even with the trach she would be able to talk with a speaking valve, but we are not sure how long that will be. She will be able to get up and move around because she will no longer have the breathing tube. She will have to stay very still for 5 days until her first trach change (changing out the trach for a new one). After surgery Nevaeh woke up about 15 minutes after returning back to her hospital room, and was super happy it is truly amazing to see her so happy even right out of surgery. She also has to have a g button (feeding tube straight to her stomach) because with a trach it will make it hard at her age to able to take food by mouth, and she has a chance to inhale anything that she drinks or eats, it has the chance to go into her lungs and make her very sick. These are new things that we will have to learn but are also temporary in her case because one day she will be able to breath, and eat on her own. So far with her trach she is settling in very well. Once she gets her first trach change she will be able to move around a lot more, and Marlee will be able to visit her. 


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