Wednesday, June 5, 2019

Updates on Benjamin

I just can't seem to get into a rhythm with posting on here. Too much stuff to do outside of the computer world I guess. I don't know. 


Anywho… the last time I posted I mentioned that we were waiting to hear back from the nephrologist because of Ben's continual high blood pressure readings. Well long story short, Benjamin is now on 3 different medications. They upped the dosage of one of the meds that they sent us home with (from 2.5 ml once a day to 10 ml once a day). There is another medicine that he takes if the higher number of his blood pressure is above 140. And they added a 3rd medicine to take that is once a day at 2.5 ml. Sounds easy enough right? 

Well, unfortunately we are still seeing higher blood pressure readings most of the time (last night they were 132/74, this morning they were down to 111/74). We have an appointment with the nephrologist on Friday as a follow-up to the hospital stay.

Also we have come to learn that our insurance is stupid. Long story short it took them 2 weeks, multiple phone calls from the nurse and us, multiple reports faxed to them from the doctors office with needed information, etc to approve one of the medicines (even though it was the same medicine they approved for him to take in the hospital). They FINALLY approved it 2 days ago on Monday. The nurse from Children's Hospital called to tell me that they had finally gotten the approval. She was LIVID as the only sticking point on approval was the simple syrup used to combine the medicine. (Ben has to have liquid meds instead of capsules/tablets). You have got to freaking be kidding me! 

Besides the trouble with the insurance company, Ben is doing okay. He hasn't been swelling, his urine is back to normal color and he is being a brat like normal! If we could just get his blood pressure to stay down then that would make me a happy momma.  

6 comments:

  1. That is some good news but poor Ben and you 3 blood pressure meds for a kid. I will tell you my dh is on Medicare with a supplement and it has been wonderful. Not much good for your son but hopefully they will figure it out.

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    1. Yeah insurance has been a pain to deal with. It is what it is. We finally have gotten his meds, however they just upped one of the dosages and I have a feeling we will have another fight on our hands.

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  2. I went back a few posts and saw that Ben had Fifth's disease. Somehow I missed that post. About 10 years ago, I had it, but as an adult it's called Parvovirus B19. I didn't know I had it though, but I knew something was terribly wrong with me. All test results pointed to Lupus! I went through a whole summer with pain all over and no energy. I went to another doctor for a second opinion and he said I most likely didn't have Lupus and he tested me for that virus. Indeed that's what it was and it eventually subsided and went away, thank goodness. Hopefully Ben will be back to his old self as the effects of the virus diminish.

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    1. That would be awful to have it as an adult. They said as it progresses he should get back to normal. I need to do an updated post as we just had another visit with the nephrologist yesterday.

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  3. I am getting caught up here.
    So sorry about your boy!!!! And insurance?
    UGH!
    I will pray things get figured out soon!

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