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Thread: Nicholas update..Good and not so good

  1. #1
    Ihostmom2mitchandnick Guest

    Default Nicholas update..Good and not so good

    Nicholas had his oncology appointment yesterday in Spokane.....
    His IVIG level two weeks ago was 507 (I think).....yesterday it was 487!
    So he basically held his own for a couple weeks! That was good!
    The nurses wanted to put his IV in instead of poke him for his blood draw....and they figured he was going to get infused.....It took 6 of us to hold him down....that was by far the worst time ever.....they put us in our outpatient room, ordered lunch for Nicholas....and came in 30 minutes later to tell us they were taking the IV out....and that we could go home!
    The not so good news is that Nicholas has very high blood pressure. 120/98.
    We are doing a 24 hour urine with him and if his kidneys are having problems, he is going to start high blood pressure meds. Now we are watching both his kidneys and his liver....not what I really wanted to hear. Poor little guy. I hope that this all is just minor problems due to a strangers DNA being implanted into his little body....and that is will resolve itself soon with no damage.....but the doctor thinks that these are chronic problems he is going to have.....(big tears)......so we are watching him yet again!
    The doctor is trying to get me a at home hospital grade blood pressure machine that I can take his pressure a couple times a day with. She wants a good one to really monitor him good. She does not want him going into our peds office at all.....because he could pick something up there....worst time of year to visit the ped.....and they have no immune compromised areas.
    His doctor did say that he could go to our county fair next Thursday.....it is all outside, and as long as we carry wipes with us and keep his hands clean....he could go. We just will stay outside in the open air. That will be fun for him.
    He is going to enter some of our veggies into the fair if our garden does not freeze by then......
    Anyway.....we are home and he is playing on the floor with his thomas train.....better run and make his quaker oats....
    Thanks for the constant prayers for him......they did run many other tests checking his bone marrow transplant numbers and they did look good.....I just hope and pray that we get this all under control very soon.
    Big hugs,
    Mary Ann and Nicholas

  2. #2
    Suzi is offline INCIIDer - A Community Creator
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    Default Good news on the IVIG....

    and I'll be praying that the other problems resolve quickly and it isn't a chronic problem. Have fun at the fair. Would he wear gloves to help protect him? It sound cool enough for some thin gloves.

  3. #3
    JoyKS is offline INCIIDer - A Community Creator
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    Default hey there!

    Been wondering how Nicholas's appt went. Well, sounds like his little body is learning to hold it's own on the IVIG! That's great news. Sorry about the other issues......always a worry for you. Darn it. I'm hoping things resolve soon and Mr. cutie pie can continue on the healthy road!
    The fair is definitely something to look forward to!!! I'm so happy to hear N. can go. Take pics, MaryAnn! (We'll be at the state fair this weekend.)

    Now...please take care of yourself too......update on that when you can.
    hugs,
    joy & lukas

  4. #4
    mk Guest

    Default thanks for the update!

    Sounds like he is doing good, despite having to watch a few things, hopefully it can all be managed easily. Have fun at the fair!

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