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!

May 2, 2016

Next Step - Decisions

A lot has happened since the last blog post. Daron's mental state has continued to drop to the point that I am now responsible for all medical decisions. The doctors decided that his durable power of attorney for health care needed to be put into place because Daron is no longer able to make his own informed decisions. The first decision I have to make......whether or not to put a feeding tube in.

I knew this decision was coming, but that doesn't make the decision any easier. Reality has just hit me full force in the face and now I don't know what I'm supposed to do. I know Daron has to be suffering through all of this. I don't want to see the suffering continue and I don't want to go against his wishes. I want to honor the man that I married - the man who told me that he does not want any life-sustaining artificial treatment. That's exactly what a feeding tube is - an artificial way of providing nourishment and medication directly to the stomach to sustain life.

If I choose not to have the feeding tube put in, that means that he will go into hospice care and begin the end stage of his life. Hospice would keep him comfortable, maintain his pain level and hopefully let him enjoy the time he has left. His suffering might decrease some, but there's no guarantee.

I'm at a loss as to what decision to make right now. I'm praying that God will guide me down the correct path as He's done before. I'm praying that God's will will be done through all of this. I'm praying that Daron will not suffer any longer and that God will grant him mercy. I'm clinging to the comfort I have in knowing that God ordained all of this before the foundation of the world. God already knows the day and time that Daron will enter Glory & im thankful for that.

This decision will be made on Wednesday morning after I've had a chance to talk to Daron myself. I'm praying that he will be clear minded enough to express himself. I don't take this decision lightly and I want to make a fully informed decision. I covet your prayers through the next few days.

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