Transition Time

Originally posted March 28, 2022 -

Today we made the decision to transition Jacob to palliative care.  It's not hospice, and Jacob doesn't have an expiration date.  It simply means that we have exhausted all medical options for controlling his seizures and prolonging his life, and we will now focus almost solely on pain control and comfort.  We can limit his doctor visits, decline tests or procedures we deem unnecessary, and have more support in keeping him at home when he would otherwise need to be hospitalized.  Most importantly, this will allow us access to pain medications and interventions that will ensure he is as comfortable as possible.  Jacob suffers every day with severe pain.  It causes him to scream out in his sleep every night.  Seizures overtake him dozens of times a day.   It's excruciating for him and for us.  We simply cannot go on this way, and we know in our hearts this is the best decision for Jacob.  

"My flesh and my heart fail; but God is the strength of my heart and my portion forever."   Psalm 73:26