5-21-2018

Hello All,

This has been a rough several weeks for us.  Brian’s blisters on his leg popped, but the scabs that started forming looked a little infected so we took him to see the family doctor.  The doctor put him on an antibiotic and told Steve to use Neosporin.   When Steve used it, the blisters started to weep.  I am assuming that this is the infection being leached out.  Anyway, we have been sort of house bound as Steve does not want to take him out anywhere with it open in case of an infection.  He does have stuff to bind it, if necessary but the doctor suggested we keep it open as much as possible.  Brian has not been able to do any of his leg therapy or ride his stim bike, which has not made him happy, as well as having more spasms.  I had rescheduled his MRI for Thursday but Steve doesn’t want to take him into the hospital and a possible source or MRSA or other germs, and I agreed.  I have rescheduled his MRI now for the end of June, after Steve has his surgery.

Our caseworker has been working for two weeks trying to find us someone to come in and help with Brian while Steve is recuperating for the first 2-3 weeks.  She has not been able to find someone, so now we are looking into nursing agencies, hoping that we can submit it to the insurance.  It has made me very nervous for Brian’s future.  Because of the level of care that he needs, agency aides are not able to provide the care with their skill set.  The caseworker said Brian would have to go to a nursing facility.  I said to her that she needed to look into this for the future because this house was built for Brian and it was not sensible to send him to a nursing facility.  I am very worried about all of this and am trying to be proactive.  My niece, who works with elderly and disability placements is trying to help me.  She was able to find a nurse who can come twice on the day of Steve’s surgery just to help with Brian.  Scott is going to stay with him that day to feed him and be here, but Scott can’t do his care.  I am very frustrated with the system that would put my vibrant son into a nursing facility because of his needs, which can be handled at home.  As usual, it is based on money.  Medicaid and Medicare do not pay for the quality of care that people may need.  If anyone knows of any solutions to look into, please let me know.

Please pray that we can find the help we need so that Steve can have his surgery and not worry about Brian.  Also, please pray that science, medicine, and God can restore Brian’s function enough that he can look after himself in the future.  Our policy makers need to explore other options for adults who have special needs so they are not treated like nuisances, put out of sight, out of mind.

Love,

Dawn