Team Meeting

Originally posted April 4, 2022 -

Jacob just didn't feel like celebrating his birthday.  He rested on Friday and only went outside for a few minutes so I could get some pictures. We took him to the park on Saturday but ended up coming home and dosing with pain medication.  Some days are better than others.

Today Kyle and I met with Jacob's new palliative care physician and I felt relieved and encouraged.  This team will take over and take the load off of me.  They will handle the communication problems between the different specialists.  They will be in charge.  They will make sure he has whatever medications he needs for comfort, from methadone to morphine.  It's like we stepped into an alternative medical universe where the typical rules and bureaucratic nonsense no longer exist.  Jacob does not need to hurt anymore -- period. That is a huge relief.  Additionally, the doctors are very positive about his current status and his ability to remain alert and aware in the coming months.  Even though we have always known this was Jacob's path, it was still devastating and frightening to reach the day when his regular doctors said they couldn't help him anymore.  I spent a week feeling completely abandoned, fighting off constant nausea and crying in the bathroom.  Today, even though our circumstances haven't changed, I feel such relief in knowing we will have a team to walk with us the rest of the way, and fiercely advocate for our family and what we want for Jacob.  I should be able to spend less time fighting the whole world and more time snuggling my son.