Monday, April 4, 2016

A Tragedy, A Staycation, and A Visit.

Mike and I had our staycation from Wednesday through Friday. It was nice to be able to relax but it was also without fail laced with some issues. Tuesday when I got home from work I received a message from a friend asking if I heard that an acquaintance of ours was in a car wreck. I told her I was not aware and then she proceeded to tell the wreck was extremely serious. Our friend Patience was in a coma and her husband was killed on impact. Although we were not super close I have known this family for about fifteen years. We met in the pageant scene and they are one of the biggest supporters of Emily's Smile Boxes. They have attended almost every event Emily has had and they said the September walk/run was their favorite event of the year. This family was all about giving back to the community and never once asked for anything in return. At Emily's box making parties they were always the first ones to volunteer to take the boxes to the local pediatric hospitals to drop them off. If they weren't volunteering with Smile Boxes they were helping tornado victims, holding food drives, volunteering with Meals On Wheels, and more. My friend Patience had overcome many challenges in her life and it doesn't seem fair this would happen. Now a family sits in a similar position we were in so many years ago. However a situation that looks so much more bleak. I have decided that this year at Emily's big event we are going to put stickers on every box in honor of Patience and Scott.  Its the least we can do after they gave so much time to Emily's charity. If you would like to help Patience family in this time of need then here is the link to her Go Fund Me page. She had multiple children and we want to make sure they are cared for in the best possible manner.

It's never easy for any family to encounter a major tragedy and the discussions that are held are difficult. More often than not those discussions and decisions are also judged by others and they really shouldn't be. Deciding what someone would want regarding quality and quantity of life is the most difficult decision there is to make. It's hard to realize that sometimes there are fates worse than someone passing and vice versa. I hurt for families every time I see them walking a similar path. 

On top of that situation Mike's dad wound up in ICU on a ventilator. His condition has some improvement but it is still very serious. They are taking his situation day by day and Mike has been visiting the hospital. 

During our staycation we had an appointment with the medically dependent children's program to re certify Jude for another year. The case manager and a nurse came to evaluate Jude and to take down notes regarding his last year. While the nurse was there she asked if I needed anything and I explained I needed everyone to stop denying Jude's nurse. She was stunned that Jude had ever received any type of denial based on medical necessity. She just shook her head and kept commenting on the issue. She said "Baclofen pump.........needs a nurse, Continuous feeds......needs a nurse, Controlled substances....needs a nurse, etc." I just shook my head and agreed. So Jude's complexity according to MDCP has changed and he is now the very top level of medical necessity according to their charts. They consider the Baclofen pump an IV and said his care never should have been questioned. If I could only have the nurse and case manager with me each time I fight these denials. 

Jude is doing well but he has been crying some at night indicating that he is dealing with some pain. We control it the best we can and generally with work we can get his smile back. I will share some more regarding places we visited tomorrow. It's not super interesting but I enjoyed it. 

No comments: