Saturday, January 23, 2016

Progression and learning

Even after all this time I am still learning so much.  Our CNA is quick to say she learns more at our house than in college.  Dan has been running some fever pretty much every night and sometimes in the afternoon and evening too.  The on call nurse last night told me his rattle was gone (it has been there for 3 days and we haven't done anything to get rid of it since there is nothing you can do) and that fever was typical in ALS patients.  I am not sure I believe her in either case.  That just doesn't make sense.  I can't find anywhere where it says that he will run fever with ALS.  Well unless he has an infection.  She asked about him possibly having an UTI.  Well the urologist told us they would say that a lot.  He warned us that every time they don't know why someone with a catheter starts running a fever  they would blame a UTI.  He said seldom to never is that what it actually was.  We have seen 3 more urologist since then and they all said the same thing.  So I think since his urine is good color, no blood, no funny smell that a UTI is not the problem so I told her so. She said "well that makes sense"  So who knows what is going on.  In the mean time I am watching him and listening to him carefully so that I don't miss what someone is missing.  I know his time is short I can tell.  He also got a blessing the other day that said that he would soon be with his father and his Heavenly Father. Soon in the Lord's time could still be way out there but we have already made it way longer than everyone thought.  We are past our 6 months of Hospice.  That is all your are supposed to get.  But because he is still going downhill they had to re certify us or whatever it is called to keep us on.  But still he has made more than 6 months.  Dan has a doctors appointment next week with his specialist (the one we trust) and I am excited to hear what he has to say!

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