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Too Little Too Much

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    Too Little Too Much

    Hi and ((((((HUGS)))))) To All ~

    We were merrily on our way each day with Jon's regular doses of Dilantin, until one whole week after Jon's last blood draw, we learned that his Dilantin level was 5.6. The normal range is 10-20. Jon's therapeutic range is 11-13. He was Tanking.

    Yes, it took Jon's doctor's nurse a week to call to tell us that Jon was at high risk of a tonic/clonic, because his Dilantin was too low, and that Jon's hemoglobin was still at 7.8, which was the number that propelled us to the ER on July 5 for no blood transfusion.

    Terrified of another horrid seizure for Jon, Jim and I agreed to increase Jon's Dilantin doses to get him back to his therapeutic level. Jon was fine, for a week, and then he slept for 12 1/2 hours. He was Overdosed.

    He entered Zombie Land, the stuporous state of Toxic Dilantin, where he can barely open his eyes, and is too tired to Tango. His respiratory system can easily become compromised, when he's in this state.

    Recognizing the signs of toxicity, we lowered Jon's Dilantin doses, and he's finally back with us. It was a scary 4 days.

    A week I waited for that call, when those two results were major red flags, and we should have been notified immediately. And then, we increased his meds, based on that test, while we waited for the doctor to call us about the hemotologist's consult, and Jon went over the top. We were operating on a week-old test; Jon's Dilantin level had likely changed in that time period.

    We didn't overload Jon, but if his hemoglobin is still low and other parts of him aren't functioning well, then maybe that has something to do with his current state. I don't know, because I haven't heard one peep from Jon's doctor.

    I've requested another blood draw this week, so that we have some idea of where Jon stands with Dilantin and red blood cells. And then some doctor, somewhere, needs to decide whether Jon needs a blood transfusion or is okay to be left with a low hemoglobin for the rest of his life. Some doctor, somewhere then needs to explain to me why that's okay.

    So far, Jon's SATS and heart rate are fine. His temp has risen to 99.8, which is high for him, but that's been going on for weeks, even after we stopped Synthroid.

    And that's another thing: Synthroid. I know it messed him up. Maybe this is the end result we're seeing now.

    Ah ... but you see ... I'm guessing, I am hypothesizing, I'm playing medical detective for my son. And I'm doing that, because Jon's doctor isn't.

    Jon is finally not expressing pain when we turn him, so the last thing that we want to do is put him on an ambulance gurney and then on an uncomfortable hospital bed. If he needs blood, he will likely have to be in the hospital overnight, as it takes 6 hours to give 2 pints of blood, and then all of the other stuff that has to be done before and after. At least 12 hours, so we might as well stay overnight.

    We are trying to avoid that, but we need a doctor, who really knows about blood and can study Jon's situation to determine what Jon needs. Since Jon is chronically anemic, that must be factored into the decision. But, there I go again, practicing medicine without a license.

    Instinctively, we knew, and Jon's current awareness confirms that he was in Dilantin Zombie Land. But, with this low hemoglobin issue dangling over Jon, we did discuss the possibility that his red blood cells were disappearing. It's frustrating to have one hand always ready to grab the phone to call the paramedics.

    As I've said before ~ it's never one thing.

    But we journey onward with hope that at least one thing can be resolved.

    Love & Light,

    Rose
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    #2
    Hi Rose!

    That is so frustrating when the doctors are leaving you to do all the detective work. Glad he didn't have a big seizure and that you have his levels better now. Hope he is able to avoid a hospital stay!!

    Lisa O.
    sigpicLisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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      #3
      Wow, that sounds scary. Hoping for no hospital stay!
      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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        #4
        ((((((Lisa & funnylegs4))))))

        Thank you for your good thoughts. Just pray for Jon's red blood cells to start multiplying between now and Thursday, when his home health nurse visits to draw his blood!

        Jon's doc responded pretty quickly via email with his blessings for the blood draw. He also understood that our ancient mini Mac is not up to the latest software on these Portal sites. A new computer is on my to do list. I need to do it before our current one conks out.

        Since Jon's nurse has access to the blood test results, I will ask her to email them to me as soon as they come in. I'm not waiting around another week for that information.

        Next week, Jon will need a catheter change, but I didn't want to wait that long to know what his hemoglobin and Dilantin levels are.

        If Jon's hemoglobin is 8.0 or better, then he's out of the woods. I want to know that so that I can stop worrying about it!!!

        I feel like I'm watching the Olympics and rooting for a winner: "Come on 8! Faster 8! Higher 8! More 8!" Speaking of which, we sure miss them when they're over, and the Brits did a great job of hosting the Games.

        Love & Light,

        Rose
        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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