Nello’s Story

Site created on June 26, 2019

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Newest Update

Journal entry by FREDERICKA DeFlaviis

Good evening all!  I apologize for not being able to post in a while but things have been a little overwhelming and sometimes your brain needs a rest. The roller coaster ride continues with some good days and others not so great. I am grateful for positive things that happen like words or small sentences other than curse words. He was great the beginning of the week and was cooperative in his way, but by Wednesday he was not feeling well and coughing a lot. I guess I am paranoid, but I fear pneumonia again and in his weakened condition that is a great concern for me.  Thankfully, he has had wonderful nurses and YAH was right on it requesting a chest X-ray which was done last night. One side has definitely improved since the last one and he receives Nebulizer treatments daily. He’s now getting Mucinex which is breaking it up we just have to figure out how to get it out of his chest without causing him too much angst. When I got there today I decided to take him for a change of scene in his wheelchair and took him for a nice tour of the building into an outdoor deck to get a little air he was calm and definitely anyone who knows Noel knows he cannot stay in one spot for too long so this was a welcome change for him. I knew he was getting tired so I brought him back upstairs and ask themTo let him take a little nap before he started to get his nutritional feed. He has actually gained a half pound. I know that doesn’t sound great but the nutritionist said that is good. He was walking in his wheelchair forward since he had sneakers on today and moved his chair up to the nurses station and tried to stand. He is determined and I don’t want him to get discouraged. He really is trying and I know he gets exhausted. I was also told that he seems to becoming a little more clear with a therapist he knows what he wants when he wants it we just have to pray that he cooperates for his own good. I try to encourage him by telling him we need him at home so he can enjoy Rose and that our family needs him. Please continue to pray for even more clarity and that the speech therapist and physical therapist can get him to swallow and build up his strength. Thank you all and I apologize for not getting back to you sooner. I appreciate all those that called me because they were worried. Your kindness and Love for Nello is very evident. Good night all. 
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