Saturday, June 23, 2012

Over The Edge

I think I am pretty good at dealing with hard stuff. In the last 5 years I have rolled with a lot of punches. I have fought my way through much adversity and I have been an outstanding advocate for my children. Yes, there have been days when I just wanted to give up. There have been days when I wanted the world to come join my pity party and times when I have curled up into a ball and just cried for no other reason then it made me feel better. However some how I always manage to pick myself back up again and move forward.

Hard is ok but when hard could be made easier I get VERY frustrated and this week easier could have been achieved but wasn't which leaves me feeling very irritable tonight. (that may be an understatement)



When we found Mr 11's blot clot that was hard but I managed to pack up a whole van full of stuff and we moved into the hospital for 5 days. When I found out that I was going to have to give him medication in the form of a shot two times a day until the oral blood thinner was at a therapeutic level, that was hard. We have gone back to the doctors office two times this week for blood work only to find out that his medication levels are moving in the wrong direction and the shots have to continue..... hard. Sometimes life is hard but all of this could be made easier with one simple piece of medical equipment.

You see, in order to get Mr11 off of the shots that hurt, burn, and cause my son to squeal like a girl, his oral medication must be at a certain level. In order to find out what that level is, we have to drive one hour to the the doctor. While we are there for all of 10 minutes they prick his finger and squeeze his blood onto a strip and put it into a machine that very much resembles a diabetes blood tester. Within two minute the little device spits out a number and we are done. Then we drive home back through downtown traffic and three hours after we left the house we are done. Hard.

 

The point in this situation that has got me all tied in knots is that there is a little thing called an INR machine that we could have at home to test the same thing. In 2 minutes we could be done. No driving. No missed therapy. No extra gas. Easy. However, it has been determined in a very black and white way that you can not access this machine until you have been on this oral blood thinner for at least 3 months and even then I have been told that most insurance companies will not even cover the machine.

The thought of rescheduling our lives up to two days a week for the next 3 months for a two minute blood test which could be done at home is about to push me over the edge. It could be easier but yet on Monday morning we will once again go from therapy to the car for an hour plus drive to the doctors office and back again to do what I could do in two minutes at home. None of this bothers me because it is what my child needs. What does bother me simple fact that I know it doesn't have to be this hard. We could be spending that three hours swimming, going to the movies, hanging out with friends, or even just getting stuff done at home.



I can access and care for a PICC line and IV antibiotics for 52 days with out issue and I can give my kid a shot of blood thinners twice a day but I am not allowed poke my kids finger and squeeze the blood into a machine for three months because some clinical directer at some company said so.

So tonight I sit in my frustration. I found a home health care company that has INR machines but they do not typically do pediatrics. I am waiting to see if there is a way that they will take my son's case anyways considering what he needs consists of about four minutes per week.



Please say a prayer that this alternative will work out. I have two kids that need therapy/medical attention. I can not and will not choose between them but I am only one person and there are only so many hours in the day. If we can get this blood work done at home or much closer to home everybody wins. Please pray.

Believe.... Prayer Works!




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