I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.
I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.
They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain
I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.
I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.
A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.
Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.
Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”
Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.
He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.
It has been a struggle to know how transparent to be with you here but seemed important to do so.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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