I thought I would explain a little on the nursing issue. I forget that not everyone talks "special needs" language.
Many of you remember that when Jude was three months old we took him into Cook's and received his diagnosis. When you find out your child is having continuous seizures you have to make rapid decisions. You cannot drop a child in that condition in daycare. That means someone has to quit their job and immediately. Since I held the primary insurance Mike had to quit. He spent two years taking care of Jude. Two years of medications, trying to feed Jude by mouth, doctor's appointments, throw up, sickness, and more. When Jude was two years old he presented with aspiration pneumonia and that's when we found out Jude couldn't take anything by mouth. We went home scared and afraid with a feeding pump.
During the above time period Jude qualified for the medically dependent children's program. He had to stay a night in a nursing home with Mike and this amazing program was in place. It took a long time to qualify but a friend helped us through the system. Part of this program is that Jude qualifies for medicaid based on his condition. Due to his illness and his feeding tube Jude then qualified for nursing through our primary insurance and through Medicaid. When Jude was little we had a small battle with both offices about the need for nursing but with letters of medical necessity we won. So Mike went back to work and Jude found two amazing nurses who lovingly care for him when we are away.
Fast forward to 2014. Prior to Jude's surgery Medicaid requested fifteen days of nursing notes on Jude. He was actually doing well then. The seizure medications were controlling his seizures and he was in moderately good health. This is really attributed to the care he receives from his nurses when we are away. They took those notes and said they saw reason to decrease Jude's nursing hours from 70 a week to 28 a week. They believe a private care attendant can do what the nurse is doing. Keep in mind a PCA cannot deliver controlled substances (like Valium), are not trained to listen for aspiration into lungs, etc. I do not believe Jude was ever well enough to not have a skilled nurse. However since that time period Jude's health has rapidly deteriorated. I obtained five letters of medical necessity. I had our nursing agency fax in thirty eight pages of nursing notes showing controlled substance use, rescue methods, and oxygen. They also showed continuous feeds with caution due to aspiration, the autonomic dysreflexia attacks which are life threatening, and more. I had requested a fair hearing in regards to Jude's nursing. I went into the hearing confident and truly believed they would see why Jude needs his nurses. However, what I got was that the state assigned doctor had not even seen all the information I sent them. They apologized. They said they had the information but it had not been properly uploaded. So they promised to upload it and have the case reviewed.
I have called several times since asking if the doctor has reviewed the case and if a decision has been rendered. I wanted to avoid the hearing if possible. It's extremely stressful and coupled with Jude's recent health issues it becomes very overwhelming. I keep being told that nothing has been reviewed and a decision hasn't been made. Finally today I received a call that there is no new update and to be at the hearing Monday 9/15 at 9am. I just lost it! Then I took action. I called Mike and asked him to take a loan against his 401k. I then contacted our attorney and retained him on Jude's behalf. I then contacted the Palliative care team at Cook's who got social services involved. They reviewed Jude's case and were astonished that we are going through this. They contacted the neurology team about possibly having one of their members in the hearing but that may be hard to accomplish. Then they called the hearing officers office and asked if there was anymore the hospital could do. Then I called Jude's nursing agency to get a copy of the thirty eight page nursing notes myself so I could give them to the attorney. I asked them, "Have you ever had someone in Jude's condition turned down for nursing or go through this". She replied, "no..........I just haven't".
I understand people take advantage of the system but we don't. We don't ask for SSI for Jude although I know others need it. We both work, we carry private insurance, and we do the best we can to contribute to society. So it's very frustrating to me that Jude is being subjected to this. He is just a sick little boy who needs his nurses and his parents. I plan to fight this with all my might but sometimes it really just becomes to much.
Charlotte said Jude hasn't had attacks today but he has had apnea. That's a bit scary to me.