Monday, June 22, 2015

same universe, different pocket

Thursday we found out that the source of Mom's pain is not her PAD. The vascular surgeon ruled it out following a leg study which showed her ankle pulses are nearly normal. Why he didn't refer us to the emergency room for help at that point is beyond me, but he did say he would put a call in to Mom's primary care doctor.  My brother left Thursday night to get back to his family.

Friday morning, hearing nothing from Mom's doctor, I realized that I could not continue to safely care for her myself.  That started a round of discussions where we went back and forth between the ideas of hospital or hospice.  She decided, after much pressure from a couple of my siblings, to come to the hospital.

I had researched her leg pain and symptoms - knees buckling when she walked - and am pretty convinced it's femoral neuropathy.  The only question is, what was causing the nerve impingement?  She has spinal stenosis and type II diabetes.  It could be a bone spur, it could be a blood clot, it could be diabetic neuropathy (which we know she has already, in her legs and feet.)  I finally got a call from the doctor who advised me to call 911 to have an ambulance bring her to the hospital, and life has been even more strange ever since.

I'm still wanting only 2 things for my mother: good care and as little suffering as possible.  Friday was horrible as she was subjected to six hours of testing.  They gave her large doses of dilaudid but that did not touch her pain, which was nerve-related.  Multiple x-rays, ultrasound, and CT scan - they had actually ordered an MRI because her pacemaker was not in their records, even though I had told them about it when we came in.

People have been super for the most part here, but the troubling thing is, they still don't now what's causing the pain.  They put her on IV steroids Friday night and for the last two days she has looked the best I've seen her.  Being pain-free can do that for a person -- and since her kidneys are so compromised, she basically can't take any pain meds except Tylenol, which she says doesn't do anything.  So she has been on zero pain medication for months, and I'm sure the relief from pain was wonderful for her.

They ruled out fractures and blood clots, but can't see any other nerve impingement.  They're happy that the steroid worked, but today they transitioned her off the IV steroid to an oral steroid and she was in so much pain this morning that she had to double up on her oxycodone, and even then it took 45 minutes for it to kick in so she wasn't wincing, gasping, or shrieking every 30 seconds.

The physical therapist is supposed to see her today and evaluate her.  I am sure they will recommend rehab and a strengthening program, and I'm equally sure that it will just be more torture for her.  The hospital atmosphere here is very nurturing, but in the rehab they expect you to do for yourself.  She will not be comfortable, and she will not be home.  And when she gets home, she will just go back to sitting all day and very quickly lose any gains she may make.

On Saturday I was with her while she was eating her dinner and I noticed her breathing had become very labored.  I called the nurse who checked her vitals, and Mom's blood pressure was so elevated they put a nitroglycerin patch on her chest.  She had been on an IV, and they had pushed so much fluid she was heading into congestive heart failure.  She has been off the IV ever since, but then we run back into the issue of dehydration.

Mom's other problem was that she hadn't moved her bowels since last Saturday, but she was finally able to evacuate everything that had accumulated.  Many of us were thinking that mass could have been adding to the nerve compression, but that was on Saturday and today's pain says otherwise.

At least, because she's spending most of the day with her legs up, the swelling in them has basically disappeared.  The skin still shows the signs of PAD and her toe is still necrotic, but the legs are not swollen, hard, and hot the way they used to be.  It surprises me that Mom is still having so much pain because they look so much better, but the pain is obviously unrelated to the swelling.

Looking back on all this I don't know why I didn't just take Mom to emergency on Monday when she first couldn't walk.  It would've made sense, but at the time I just figured it was a progression of her PAD.  When we learned it wasn't, that pushed me to call for help.  In retrospect, I should've called for help immediately, but then there was the fact that Mom didn't want me to.   I feel like this whole process has been horribly accomplished so far, and we are not even close to being done.

Physical therapy is here now evaluating her fitness, and it's clear that her mobility and strength are very compromised.  And now the nurse practitioner has come in to say they are moving Mom to rehab this afternoon!  All of this is happening very quickly.

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