Thursday, July 23, 2015

routine

I’ve gotten so bogged down in the daily routine that I haven’t taken the time to stay connected to my best friend. Since I think about you and what you might be doing on any given day, I just assume that you are doing the same and that for me accounts to meeting and having lunch together.  Our imaginary conversations can get quite involved and they have thrown us out of a few places because we laugh too loudly and 
too much.  I hope you enjoy those imaginary lunches as much as I do because they will have to do for awhile.

Mary’s recovery is going very slowly.  She’s been home for three weeks now and doesn’t seem to be any better now than the day I brought her home.  She still has a lot of difficulty with eating even though her nausea has been somewhat under control for some time.  But her stomach refuses to accept most of what food we’ve tried t get into her.  Last week she was so sick and in so much pain that eating anything was a pipe dream.  She is losing weight everyday.  The continued weight loss is the thing that worries her doctor more than anything.

So she insisted when we saw her doc last week that she needed to have a feeding tube put in so she could get some nourishment.  She is convinced that she is dying from malnutrition. So the doctor gave her several options for installing the feeding tube and she chose to have the endoscopy procedure where the tube is pushed down through her nose and throat.  She thought that would be the least painful and most effective. The object was to place the tube outside her stomach, going straight to the intestine with the nourishment since the doc figured that the food going into her stomach when she ate anything was the cause of the nausea.  She was wrong about the nasal tube being the easiest way to go.  She found that she couldn’t tolerate that foreign object in her nose and throat and after four days she begged to have it removed.  The result of all this dancing around, I think, is going to be a new feeding tube surgically installed into her stomach.  Just what she wanted to avoid.

Of course, having the feeding tube put in with her being at home and not in the hospital or a nursing facility, got the insurance company off the hook. Nothing was covered by insurance.  We had to rent the pump and other apparatus from the medical supply company that the Homecare Agency uses and buy the liquid food that gets pumped into her.  Two cases of food plus the all the gizmos to make it work will set us back around $1300 for just one month.  But since she only used four cans of the food and had the equipment for less than a week, we are hoping we can negotiate a lower price for it all.
So we are back to square one as far as eating and getting the healing over with and regaining some strength so she can at least get from the bed to the couch without getting winded.  

Mary is supposed to take her blood pressure, her oxygen level and her weight every day using digital equipment supplied by the Visiting Nurse Homecare Group. Those digital readings are sent wirelessly to their monitoring station where they are recorded and analyzed.  Then someone from the nurses group calls to verbally get the same info from her.  That way they have a couple ways to check up on her everyday.  Then twice a week a e visiting nurse stops by to see her to check vital signs and do whatever needs to be done for her.  Also twice a week a nursing assistant comes to bathe her since she is not strong enough yet to take care of herself. I have to say I am impressed by the quality of the car she is receiving. 

Mary hasn’t set foot outside except to go to see her doc since she came home. I fear she is going to become agoraphobic if this lasts much longer.  She absolutely refuses to see any of her friends.  She is embarrassed by the way she looks and doesn’t want anyone to see her like this. Her closest friends are begging to come visit her, to cheer her up and show that the care about her. But she isn’t buying it. I can’t force her to be sociable any more than I can shove food down her throat.  So our days are spent in isolation indoors.  At least I can still open the shades without argument. 


So this has been the summer from hell so far.  I try to keep a positive attitude and continue to mutter the mantra “one day at a time.”  I admit that I am getting tired of this sickly routine.  My frustration and worry have caused all my physical problems of late as well. If Mary is having what we consider a good day ( being able to keep a little bit of food down, doing a couple or three laps around the condo using my walker, talking on the phone, and not using many pain pills) then I will have a good day.  If she is having a miserable time that day, then I can look forward to stomach cramps, increased Parkinsonian symptoms, trouble breathing, and any number of other things that can go wrong.  When I get like that, I feel so helpless and worry that I won't be able to take care of her.  Worst of all, we don’t laugh anymore.  This medical stuff ain’t no picnic.

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