Saturday, June 09, 2012

Urgent: Noah needs our prayers

Noah's parents just learned that
Medicade has decided to take away
Noah's hospice care.
This includes the very bed he sleeps on,
the nursing help he gets daily.
Here is what Kate explains this means:
(from her blog post):
So what does this MEAN for Noah?

1. Loss of routine hospice nursing. His nurses do not do "private duty nursing" - they don't change him, give his meds, fix his meds, etc. We do all of that. They DO come at least 2 time every week to assess him, do vitals, draw labs, interface with specialists, and MUCH more. If we are concerned about anything any time of the day or night, we can call and a nurse will come out until we feel comfortable.

2. Loss of more extensive hospice nursing. When Noah is sick, it's not unusual for a nurse to sit here for hours on end constantly monitoring vitals, working with the doctor and infusion pharmacy to add or adjust meds, etc. The nurse might come every single morning for a long visit then pop in a couple more times during the day to check on him again and make needed suggestions or adjustments.

3. Loss of crisis care nursing. If at any time it looks like Noah is within 3 days of passing away, we'd have 24/7 hospice nursing in home.

Noah has come to love and trust all of his nurses (as do we). This will be such a massive loss for him even just in terms of relationships.

In contrast, Noah will go back to what is called "home health nursing." He gets a MAXIMUM of FIVE VISITS A MONTH. That is it. It doesn't matter how sick he is, how many labs need to be run, if he is suddenly critical and dying. 5 a month. If Noah were to suddenly take a major turn for the worse with an infection and there wasn't time to get hospice set back up, he could die here with just us with no nurses or anything.

Better yet, it is not looking likely that we can even FIND home health nursing for him. Our beloved home health nurse who cared for Noah most of his life is moving to manage a branch office in another county. She was the only pediatric nurse for their agency for this county. When I spoke to her today, she couldn't think of another agency in this county that took children or that would take children as incredibly fragile and complex as Noah.

Even if we do get home health nursing, it will be with a stranger who doesn't know Noah and who won't get to know him too terribly fast with just 5 visits a month. She won't be hospice trained. We couldn't call her at 11 PM if Noah was hurting and have her DO something about it.

Please pray.  I (Elizabeth) am at a loss of words.
Lord have mercy.

1 comment:

margaret said...

I couldn't get my head around this either when I read it. Palliative care has one purpose - to make life easier for the dying, and yet they're telling Kate her poor little man isn't dying the right way. It's heart-rending.