May 8, 2016

Holding Pattern

Wednesday, May 4, was a tough morning. I had to meet with Daron's care team to discuss the feeding tube decision - Daron will not be having one put in. The meeting did not start as I was praying it would. It became clear that things were not as dire as the doctor had been telling me. Yes, Daron needs a feeding tube......No, he is not going to die right away without it. The nursing staff & speech therapy recommended the feeding tube for accessibility purposes when Daron has issues swallowing his medications. Basically, everything I'd been told by the doctor for 2 weeks was a lie. I had asked him about that point blank on the phone more then once & he lied to me about how bad the situation was.

After hearing that, my strong-willed stubborn attitude came out & I left the room with a slam of the door. Not my finest moment, but it was better then saying what was really in my head. After having been told for 2 weeks that either Daron would get the feeding tube or he would have to go into hospice care, being told that that wasn't truly the case made me feel an anger I had never felt before & never want to feel again. I had to leave the room before something was said or done that I would regret. I don't regret walking out at all. I needed to clear my head & calm down so I could hear what the team had to say.

Thankfully, the psychologist was willing to help me talk through my anger & help me see that the situation was not black & white like I'd been led to believe it was. I was then able to talk to the palliative/hospice doctor & come up with a care plan for Daron since he won't be getting the feeding tube & doesn't qualify for hospice right now. The plan is to keep him as comfortable as possible & follow his lead as to what makes him comfortable. She told me that he might be moved to hospice at any time depending on how his MS progresses. So we are in a holding pattern right now.

Daron has been moved to a different ward on campus, which is a good thing. It means that he has a private room & bathroom. It also means that he has the palliative/hospice doctor in charge of his care from here to the end. I am on the same page with her on his care & that eases my mind immensely.

Only God knows how long this process will take. Only God knows the day & time things will happen. Only God knows how all of this will end. Only God knows if I'm strong enough to get through this.......if I'm not, only He will give me the strength I need. Only God can give my family & Daron's family the peace beyond all understanding that we need through this. The holding pattern won't be easy at all. Every day can bring something different & one day will bring the decision to place Daron into hospice care. But we trust the God who created all life, who knows the number of our days, who saw this moment before the foundation of the world, who will never give us more then we can handle. We trust that God will carry us when we can't carry on & hold us when we collapse under all of this.

Thank you for your continued prayers for all of us during this time!


  1. Oh Cathy, I'm so sorry you are going through all of this. I pray God continues to give you the strength you need. And the wisdom to make the tough decisions ahead of you.

  2. So frustrating! But glad it is all cleared up and you actually know what is going on. Praying as you wait. And sending hugs.


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