A punch in the gut...

Well...more like a body blow followed by an upper-cut to the chin...

So the hospice doctor came out on Monday with a nurse to check up on Nana.  The visit went pretty well, and they discussed some options with Laura.  What Laura found out yesterday was not encouraging at all...

One of the medications that Nana receives to keep her blood pressure up (so that her kidneys are able to do their job) is midodrine.  Her supply runs out Thursday morning.  The nurse called the pharmacy and found out it's been pulled off the market, and that there are no meds to take its place.  We're going to do a bit of research in this, as it looks like the FDA called for it's withdrawal from the market in August 2010, and relented from this in September 2010.

If we aren't able to get in a supply of midodrine, Nana's blood pressure will drop.  The doctor said that a pacemaker would help, and possibly extend her life several extra months.  When Nana heard the cost of such a device (around $20K), she said she didn't want it.  :-(

Laura was saying that she thinks it might be time to start making some phone calls...

Home Hospice Care

The other day when the visiting nurse was checking out Nana, she suggested hospice care as an alternative to having to continually take Nana in to see different doctors.  This would provide a means by which a doctor and nurses could continue to come to Nana to evaluate her.  So Nana decided to go with it.  This started last Thursday...

My big problem with this is that it's hospice care.  EOJ  EOT  exit(0);  halt -q  margin :0,:1  That's it. Your done. End of the road.

In talking it over with Laura, they (Laura and Nana) felt it would be best for Nana to be able to receive care at home instead of having to go through all of the stuff they need to do when taking Nana out.

So far, we've gotten a new oxygen enricher, new oxygen tanks, new transport chair, and I think they'll be trying to deliver a hospital bed next week.  She'll be getting a visiting nurse coming by twice a week, and some sort of assistant two other days of the week.  And a doctor will be stopping by from time to time to check up on her.

The good news is that Nana can go off hospice at any time.  I first thought that it was a one-way street, or like a roach motel--once you check in you can never check out. Until you Check Out.  I'm still not entirely certain about whether or not this is a good thing, but Laura has spoken with several of the people who have come out and she's much more at peace with it now.

I'm really hoping that she can build up enough stamina that she doesn't need all this support, and I certainly hope I'm not disappointed.  Things are so crazy hectic in the house right now, we just need to get to some form of stability going.  I'm glad that the kids are old enough to mostly take care of themselves, but school work seems to be coming less and less of a priority.  Especially as Laura has to spend more and more time daily helping Nana with just simple little things.

Long days

It seems that with the time change, the days truly are getting longer.  A feeling of ennui is starting to set in, and this isn't a particularly good thing.  Laura's days are a flutter of activity between school for the boys, running Mom's Taxi Service, the routine household chores and now caring for Nana, coordinating doctor and in-home health care visits, doling out medications, and a new one: working with the insurance company.  Laura really does deserve a gold star for doing all this, but I think she'd just settle for a good long nap.

One piece of good news is that the catheter incision on Nana's leg has stopped seeping, and has been dry for the last couple of days.  We had just gotten enough supplies to deal with this and that's when it stopped.  Even though that's a bit ironic, I'm happy that her leg healed up.

The down side is that Nana is having a harder time breathing, she's still swelling, and it's getting progressively more and more difficult for her to get around the house.  We've had to put one of our sturdy kitchen chairs in the hall way leading to Nana's room so that she has a good place to grab or sit if she starts feeling weak while moving in our out of her room.  Also, one of her medications has a side effect that causes her to feel itchy, and this is making it difficult for Nana to sleep at night.