April 17, 2018

Wow oh Wow!  We had a meeting with Partnership in Hospice yesterday and it did not go well at all.  I need to provide you with some background first.  

Daniel's body has a reaction to the plastic in his body.  His body wants to reject all of it which makes sense. but creates a lot of havoc for him and his nurses.  He has a feeding tube (PEG tube) and he has a tracheotomy.  His body likes to build up granulation around all of the plastic parts and make the stomas (an artificial opening made into a hollow organ, especially one on the surface of the body leading to the gut or trachea.) very sore and sensitive.   The nurses clean these area twice a day to avoid any infection.  The PEG site is much easier to clean and get rid of the granulation with silver nitrate.  However the trach site takes a bit of surgery.  They sedate Daniel, and the doctor cuts out the granulation in his trachea.  They also replace the trach itself, too complicated to describe why but believe me it needs to be replaced.  All of this is considered "comfort care" and not a medical necessity. 

Hospice does not allow any invasive surgery or anything that would "save a person's life". Having the above surgery does not save Daniel's life.  So we had a meeting yesterday about the procedure.  I had canceled this procedure twice because Daniel was not stable enough to have it done.  His trach site is really hurting right now and he is requesting to have this surgery.  We usually do this procedure twice a year for the past several years.  The surgery is scheduled for May 17th so I gave a long notice to hospice so they could help me get him to the hospital, etc.  

Instead, they told us yesterday that Daniel would be released from hospice on May 16th, then have the surgery the next day, and may not be readmitted to hospice the 18th.  They have decided this is a life saving measure and will not be tolerated.   

Of course we were in shock, Daniel has so many life threatening issues.  Five years ago we were told he was hospice eligible without the ileus issues.  

Hospice takes over all the medications, the ordering of supplies, they change your pharmacy, it's incredible how they change your life.  So, this means, I am expected to change everything back and get Daniel covered by medicaid, medicare for the surgery.  They have certainly made my life hell.  

 I have heard only good things about hospice but this organization has caused a lot of upheaval in our lives, breaking confidences, telling lies to a nurse, really causing some major concerns.  

I guess my day today will be filled with calling the other hospice groups in our town and asking them if they will take Daniel as a client.  I think he would be a money maker for anyone who is willing to take him on but what do I know?

If any of you have any experience with hospice in Missoula will you please let me know you opinions and suggestions.  I am truly at a lost as to what to do now.   

Daniel's father, John, and his wife, Janice, happened to stop by in the middle of the meeting and were just as upset as I was.  Daniel is totally freaked out and wondering what all of this means to the care of his final stages of life.  It was a mess.  I'm crying, John's yelling, Daniel is being reasonable and finally after everyone left asked me to start looking for different hospice groups.  

Thank goodness Daniel has the sanity of the group.  I feel so unsupported, I even asked where is their compassion?  They told me the people in the room had compassion but they were apart of the team who made the decision.  I told them to hug their healthy kids.  Angry?  Yes, very.  Heartbroken?  Yes, very.  Lonely?  Very.  Confused?  Yes.  

I'm so thankful for the nurses Daniel has, they will group together and see us get through this time.  Mother bear, yes I am, I have to be.  

I love you all.