Wednesday, April 18, 2018

The waiting game

This has been an epic week...no trips to Salt Lake.

 It feels weird actually.  I'm itching for a long road trip when I can leave late at night, after having only a few short hours of sleep and chew caffeinated  gum like there's no tomorrow. 

Just kidding...I'm sick of my car.

No PET scan results in yet.  I imagine by next week. 

This week is not without a barrage of medical stuff to do.  Monday, I spent over two hours at the hospital getting all the blood work, scans and x-rays I needed that I was shamed out of getting last week at the Rheumatologist's office.  This morning, I get to have an injection in my back that, fingers crossed, will improve the quality of my life some.  I can't even imagine what it would feel like to be pain free, even if for one day.  Because my kidneys are screwed up, I've been avoiding Ibuprofen or Tylenol so life has been extra miserable in the pain department.

Also today, Shelbie gets her splint off and we get to see how horrible her finger looks.  She continues to run a low grade fever- it's been two weeks!  She has a cluster of lymph nodes that are growing under both arms so I am starting to feel a little anxious. 

In Sam news...the Nephrologist has determined that a virus has attacked his Uro-genital track, from his Epididymis all the way to his kidneys.  His kidney function is looking better, though he still has some blood and mucus in his urine.  His white count is also starting to come back down to his usual low number of 1.7.   The bigger concern is his blood pressure.  In theory, with his kidneys healing, his blood pressure should be dropping as well but it's not.  He bounces between 179/107 and 139/89...if memory serves me right.  I am suppose to take his blood pressure on both arms, three times a day and send it in to our doctor.  After two weeks, he will determine the best course of treatment. 

He has a hunch that perhaps this is a cardiovascular problem more than a kidney problem.  Did you know the blood pressure and kidney function have a direct correlation?  I have studied about this with my own kidney stuff but he confirmed it!  There was some fluid collecting around his kidneys that showed up on the ultrasound and he does have some enlarged ureters.  Sam has blood shunting on the outside of his heart due to Arterior Venous Malformations or AVM's for short.  It's a result of his disease. This shunting is creating his heart to enlarge.  The concern is that perhaps it has advanced and that is the reason for the increased blood pressure.  He could also have a problem somewhere else in his vascular system.

At any rate, the next stop for Sam is the Cardiologist in two weeks as well as Immunology.  The fact that a virus hit a major organ without any sign of fever or immune response to speak of, tells me it is probably time to start plasma transfusions like Shelbie does.  He gets way too many viruses and strange bacterias. 

In some happy news...Sam has been a 'big brother' to a little boy in our neighborhood who doesn't have a dad around.  They have been working on his Pine Wood Derby car for the big race tonight!  It's been so fun to see Sam helping this little kid out.  When they first started working on it last week, I said to Sam, "Don't dad manage this project.  Let him do all the work, just make sure he doesn't cut off a finger." 

You know...dad's can get carried away with projects like Pine Wood Derby cars and the night of the race, you call which car is a dad's and which car is the one built by a kid.  This isn't a Dad car.  It's been a treat to see the light in this little boy's eyes as he sees his awesome car!  I'll post pics tomorrow.

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