Thursday, February 14, 2013

Let's make it work this time.

Edward wrote this up so well, I'm just forwarding it on.  Love to all of you.
(Arnold -from his own bedside) 2/13/13

It is about time that I give an update on Arnold/Dad's status.  If I have forgotten anyone, please let me know.

As most of you know, Dad has been in the hospital for a little over a week for his second visit in a month.  We are not certain what is 'causing' the breathing problem, but for whatever reason he has not been able to breathe properly.  After some swallowing tests it was learned that apparently he is not able to swallow correctly and bits of various particulates will get into the lungs, which cause problems like pneumonia, not to mention the general difficulty of breathing the equivalent of a smoggy day.  To add to the problem, his body is not able to get the particulates out properly which is causing blockage and labored breathing.  Long story short, they put a tracheotomy in so that he can breathe better.  This time they are going to leave it in "indefinitely". [Arnold: I'm told that doesn't mean forever, just that the removal date hasn't yet been determined.]

Eating is now different as well.  Dad decided to go for a stomach 'peg'
rather than an NG tube through the nose.  Yes it is more invasive and more of a long term thing, but since prescription liquid diet is also now going to be 'indefinite', he felt that it was better than having a thing sticking out of his nose all the time.

All of this does mean that he will need 24 hour care now, 'indefinitely'.
Mom has hired a couple of women she has known from church to help out.  He will need help with feeding, suctioning and medications as well a minor help with things like dressing and the 'running around the house' kind of things that are hard to do when your mobility is limited.  There is a bunch of new equipment kicking around the house now.  We will probably have to give up the feelings of guilt over the amount of garbage that will now be generated (tubes, bottles, containers, wrapping, etc), but it is nothing compared to what goes on in the hospital.

Speaking of mobility, while his overall mobility is limited, once he gets walking he is a speed demon and is able to walk fairly well (using his standing walker of course), even better than the nurse thought he'd do.  As of the moment talking is a trick, but doable so long as he plugs the trach tube.  We are hoping for a special adaptor that will allow him to talk for freely.

Mom, the caregivers, Tiffany, myself and even Timothy all got trained yesterday on how to suction the trach, administering medications and food.
Timothy's words were "it was not that bad."  Pretty proud of my 13 year old for getting in there and trying it out.

Dad appears to be on a mood upswing as he is working towards coming home.
As you can imagine, coming home is always a good thing.  Only time will tell how things will be in the long run.  There are various treatments that may work to help him, but it will have be weighed against the usual things like time, pain, chances of success, invasiveness, etc.  You know, the usual.

So I think that is the latest.  Last I heard he will be taking home via medical transport or ambulance.  I think that is more of a CYA thing for the medical people; "Hey, last we touched him he had full medical support."  I think he should come home with the lights and sirens going and a blow horn going, "Now here this, ARNOLD HAS ARRIVED!"

Thanks all!


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