I hate this nightmare that I have been living for the last 11 days. My daddy always seemed larger than life to me. I know in my heart that we all must die, unless the Lord hastens, but it's hard to imagine that my daddy maybe leaving us soon. He always was such a strong man, and it just seems like we are being punished for all the love and good times that our family has been blessed with.
Daddy was doing great last night (Wednesday). This afternoon the ENT doctor came by and scoped daddy to look at his vocal cords. His breathing became progressively worse. I admit, I did not feel good about leaving him at the hospital. He had a good nurse and she said she would call if his condition changed. Becky received a call from her early Friday morning, saying that daddy's breathing had not improved and that they were putting him on c-pap, otherwise known as bi-pap. The nurse said that the Lung doctor did not approve the steroids that they said could possibly help with daddy's breathing, and to continue to monitor his breathing. We went to the hospital and were able to spend some time with him this morning. His breathing continued to deteriorate, they had stopped all fluids and he was just basically lying in his bed dying. Friday afternoon, we worked on an effort to transfer him to another hospital, because we felt that they were not doing anything to help daddy and just waiting on him to die. His UFP doctors met with us at the hospital and told us that daddy could not be transferred unless he needed a procedure that couldn't be done here. Otherwise, we would have to find a doctor at the receiving hospital to accept him. These two doctors told us that daddy still has bacteria in his lungs and blood and that the x-ray made three days earlier showed pneumonia. This was the first we had heard of that! These doctors became aware of exactly how disappointed we were with his care and the lack of communication to the family. Katy called 4020 and met with the nurse manager. She had Deanna removed from daddy's case due to unprofessionalism and her confrontational and argumentative attitude. She lied to us about daddy receiving the steroid treatment on Thursday night and argued about a leaking IV that was causing daddy a lot of pain and swelling in his left hand. The nurse manager that Katy spoke with facilited consults with ENT and GI doctors to get a feeding tube put in.
Daddy's breathing continued to deteriorate last night, and they put him back on the ventilator. He looked so much better. At least now, we can sleep and rest. He had a restful night and his vital signs remain strong.
Saturday morning, we met with Dr. Bedalyn (sp*) and he suggested giving daddy a trach rather than having him on the ventilator. After much discussion, we agreed and this will probably be done on Tuesday, possibly Monday. Later Dr. Cyzner (sp*) came in and he is confident that he can put in an NG tube to facilitate getting some "food" into daddy's system, so that his body can begin to be nourished. He will do this on Sunday at 2:00 p.m. Finally, things are looking up. Thank you, God for your blessings!
Jerry left to go back to Wilmington because he has some work that he needs to get done. I will stay until after the procedure tomorrow.
I love you, daddy! You are my hero!
Word of warning - only go to CMC-Union if you don't want to live! Aggressive care will not be offered freely - you have to be forceful to get it!
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