Saturday, August 30, 2014

Please pray for Noah and his family

As most of you know from following Praying with my Feet for several years, I have been praying for little Noah Estes who has mitochondrial disease. He just turned eight, which was a miracle. Unfortunately, the news I have been dreading for some time has finally hit: he is almost out of central access locations for his IVs. He has no way to absorb any medication or nutrition via his digestive tract and so depends completely on his central line for all painkillers, antibiotics, nutrition, fluids, blood products, etc. His most recent line was place femorally (in his leg) but that is considered a short-term solution. When that access fails, which it is bound to do, possibly within months, he has one more access site in the other leg. And then, nothing.

Noah is on pediatric hospice (which is different from adult hospice) and his family's goal is to keep him as comfortable and happy at home until he goes to be with God. Please pray that they, in conjunction with his hospice team, will have the wisdom to make the best decisions in keeping with this goal. Also, and very importantly, that they will find at least one private duty nurse. Due to a series of unforeseeable events they are left with no private duty nursing right now. Noah's parents are extraordinarily skilled in his care, but they need assistance because it is a 24 hour job and they have seven other children. And pray for the peace that passes all understanding: losing a child is a terribly hard thing. Lord have mercy!

3 comments:

  1. Lord have mercy; just read this and Kate's post; while it is a blessing to that they can't do the one intervention she wrote on, this is, as you said, incredibly hard. Prayers continued!

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    1. I think it is a blessing that decision was taken out of their hands. I don't think the AV fistula would have worked and it would have been serious surgery.

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