Silas was discharged late Tuesday evening, which almost did not happen. Like everything with the hospital, it was a mess. His prescriptions were faxed the day before to the only pharmacy in the area that can compound his meds. The pharmacy delivers to the hospital but somehow there was a mix up and they were not even received as if 5:00 pm on Tuesday. The pharmacy closes at 6:00 and I had to drive through rush hour traffic to get there 2 minutes before they close. Also during this time, I left Silas with the doctor and nurses who kept him with them at all times. Even though it is their job and they are trained, this made me very nervous. But I wanted to go home so badly and I knew it was what I had to do to get us home. He was discharged, but still his diagnosis is unknown.
Not having a diagnosis is making things very difficult for scheduling therapies: physical, occupational & speech. There are waiting lists. A child is placed on the list according to their diagnosis. Well then. This child has had NOTHING for 5 years! Hardly any medical treatment, he was not even fed properly. I would say his need is pretty urgent for therapy! The receptionist at the OT office actually hung up on me. She said I am not supposed to call for an appointment, they call me. Well, I was just following the instructions on my discharge papers.
All of the other follow up appointments are also difficult to make. Appointments are not available for months. That is also making me angry. Silas needs medical care now.
He is still having the muscle spasms, but they are not as bad. I can most of the time find a position for him that works. This often results in me holding him much of the day. He can not be on his back at all, sitting up or laying down. But he can not lay on his stomach, he just had his g-tube placed. The doctors have no idea what disorder he has. And although I know they did many routine tests, I feel as if enough was not done. I suggested an MRI of the spine, but they did not think it would help. I feel like he is not a priority and the pain he is having does not matter to the doctors. I just want them to find out what is hurting him & stop it, completely. Not just lessen the spasms.
I have started looking into going to another hospital. Cook Children's in Dallas has said they will look at his records and let me know if they think they can do anymore for him. I have to find a neurologist that will not just give up after the routine tests. Also, a neurologist that will listen to what I say and spend more than 5 minutes with him before dismissing what I observe is happening every day. If there is anyone out there that knows of a fabulous neurologist, I am open to suggestions.
Things are going overall pretty well here at the house. We are still trying to get organized and routines set. I know things will get better when we can figure out what Silas has and treat it completely. We are putting up our Christmas Tree tomorrow and attending service at 3:00pm. This will be our first outing, the whole family, what better day than Jesus' Birthday to have our first outing?!