The Next Step

A few weeks ago we had an appointment with our favorite doctor who is a pediatric geneticist at CNMC and a palliative care team member. I have written previously of changes we are seeing in Oliver. We know the signs having been through this before. We thought it would be beneficial to meet with Oliver's team and discuss what we are all thinking. We adjusted meds, talked about holistic approaches, self-care and quality of life. It was mentioned that we should have an introduction meeting with our local hospice agency.

We were given the booklets to go through about end of life decisions, DNRs, and our rights. These were incredibly helpful with Wavey, but we already know our choices. Grace. Dignity. Peace.

Hospice for children is very different than for adults. Typically they are brought in to help when there is a terminal prognosis. It isn't a place, but rather a system to help families walk through dying. A child's death and an adult's death look very different, so hospice is often brought in earlier for children.

On Friday I received the call from hospice. We have been referred and they want to come out to our home for a preliminary appointment. It's a good thing. It is another layer of support for Oliver; a new member of his team. It is also helpful to be registered with them when/if Oliver passes away inside of our home. Police don't have to be called and arrangements are expedited. These are some of the practical things one has to think about when caring for a terminally ill person.

We had a great experience with the agency when they were caring for Waverly. Our nurse was incredibly special and I hope she is available to care for Oliver. A social worker is scheduled to come on Thursday. It will be awkward. How can the beginning of such a relationship not be? We will stumble and I will try to hurry things along given that we have done this before.

By Thursday afternoon we will have a new member of Team Oliver. The final add to make it complete. They will walk with us through the most holy and painful times. I will both hate and love their presence.


Please know that Oliver is not on his death bed. This is merely preparation for what is to come. I want to be transparent about our journey, but I do not want to alarm. This is simply our next step in hopefully what will be many more to come.

Comments said…
Such wisdom. Thank you for sharing it. Xoxo

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