Sunday, December 9, 2012

The plan.

Tomorrow morning Wyatt will be admitted to the Hospice inpatient unit (the IPU.) I can say without hesitation, this decision was a difficult one for us to make. There are many differences between our regular hospital, A.I. duPont Hospital for Children, and the IPU. Some are nice changes, some are not (to us). The hospice team has been doing their best at reassuring us and trying to ease our concerns through this process. A few months ago we took a step away from our palliative care team at the hospital because Wyatt's overseeing doctor was leaving on maternity leave. At that time a hospice attending had taken over his care. That switch in care changes a lot in a situation such as this. Hospice can more easily take care of his pain medications, which is what we need to do. But the hospital is better equipped to handle his medical care, which we have concerns about. I emailed Dr. R in tears Thursday morning asking him to call our home. I had officially hit my limit. What I really wanted to say to him -- "I can't do this!" -- meaning everything. The pressure of the last couple weeks is just too much. Though, I censored my thoughts and instead merely explained the situation, looking for his opinion. At the time that he did call I had pulled myself together as the hospice nurse and social worker were now sitting around my dining room table waiting for us to make a decision. I don't know that my conversation with him helped me make the decision, but I needed to hear his thinking.

I've only received bits and pieces of the actual plan for when we arrive at the IPU tomorrow morning. Today we must work on packing, including all of his equipment, medications, TPN and supplies.

We haven't told Wyatt of this plan just yet because I didn't want him to worry about it for too long ahead of time. At one point earlier in the week I casually mentioned the possibility of having to stay at another facility, not at "our hospital", and he very clearly yelled "Nooooooo!" and became upset at the thought. This weighed heavily on my mind when making this decision. The IPU is all new doctors and nurses, he won't be arriving to all the "friends" that he's known for so many years. That's not an easy transition to make (for all of us.) Please pray that when we tell him of what will be happening tomorrow morning that he's able to accept and understand this. And that the switch in medications will go smoothly and easily with no harm to him and his body.
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  1. Wishing for comfort and peace for Wyatt and all his family. You all will be in my prayers.

  2. Sending positive thoughts of love and support to Wyatt and your family. I think of your struggle often and I can't imagine how you keep it all together? Obviously Wyatt gets his strength and courage from you.
    Update us when you can, we hope the move goes well!

  3. I pray the Lord will be with you as you move along. I hope the IPU is a comfort and you can all breath a little easier. Could there possibly be someone there that he has met before? Either way, I hope he knows they love him. Praying, too, that you will come back home soon.

    The Barrs