I don't know what to say, or even if it should be said; but I & my family are reeling from the realities that are hard to swallow.
We were told 2 weeks ago that we were/had run out of options to prolong the life of Micah's liver and we needed to start considering our plans as he is not a candidate for a transplant.
Today, after over an hour meeting with an amazing doctor & nurse with the Peds Palliative care team we have put our wishes and plans into writing.
There is something so very concrete about seeing a DNR order (hot pink in NY if anyone cares) with your 9 year old's name written at the top. Discussing options for having hospice as if we were talking about the weather seems so abstract until you get there WAY to early.
We don't know how long, but all the specialists feel it can be counted in months, and thus the focus is formally shifting to comfort and dignity. For those that might wonder we will continue all tx, and things such as IV abx but primarily at home as that is best for him. Beyond that, we will walk each day and love him for that is what we have left to offer.
I may or may not post here a lot; know I'm not gone and I'm probably reading if not posting. But sometimes you have to huddle with your family and hope you survive the storm and this is one of those. If you are interested, feel free to PM and I will add you to FB as that is where I will probably post updates.
We were told 2 weeks ago that we were/had run out of options to prolong the life of Micah's liver and we needed to start considering our plans as he is not a candidate for a transplant.
Today, after over an hour meeting with an amazing doctor & nurse with the Peds Palliative care team we have put our wishes and plans into writing.
There is something so very concrete about seeing a DNR order (hot pink in NY if anyone cares) with your 9 year old's name written at the top. Discussing options for having hospice as if we were talking about the weather seems so abstract until you get there WAY to early.
We don't know how long, but all the specialists feel it can be counted in months, and thus the focus is formally shifting to comfort and dignity. For those that might wonder we will continue all tx, and things such as IV abx but primarily at home as that is best for him. Beyond that, we will walk each day and love him for that is what we have left to offer.
I may or may not post here a lot; know I'm not gone and I'm probably reading if not posting. But sometimes you have to huddle with your family and hope you survive the storm and this is one of those. If you are interested, feel free to PM and I will add you to FB as that is where I will probably post updates.