Just had one of the scariest days of my life

135

Comments

  • vedderfan10
    vedderfan10 Posts: 2,497
    Oh my gosh, Mindi! I am very sad to hear this about your daughter...but yeah, she's being treated and you're sounding very strong (although it's good that you can cry and be scared, too)...My brother used to bleed from his ears and his nose all the time when he was a kid. Freaked me out to no end...ick...but he grew out of it. Got some tubes in his ears and that was he end of it. Nobody had any idea what was going on...

    But my thoughts are with you and your family and your little girl...best wishes and positive vibes are being sent from Vancouver Island...
    be philanthropic
  • Buru
    Buru Posts: 8,473
    That´s really scary, mindi.
    I hope your daughter gets better soon, and they find a way to stabilize her platelets.
    y la banda de Guille... cuando toca?
  • Jeremys Spoken
    Jeremys Spoken Posts: 7,578
    Here's hoping for the best, for your little princess.

    Stay strong.
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  • edvedder913
    edvedder913 Posts: 1,810
    Mindi-
    I posted something about this about a month ago. This exact thing happened to my 3 year old son - who is now almost 9 - we were in Columbia Hospital for kids in NY for almost a full week - they thought leukemia at 1st too - but it was this blood disorder. It is SO RARE. I couldnt believe I was reading this.

    Most cases, this will happen to her only this once and she will bounce back and be normal. It is really scary. 5 years later my son's platelet count is still really low. Not dangerous, but low. he cannot play contact sports because of it. As they grow older sometimes they need their spleen removed, or in your daughter's case, a transfusion is necessary. I PROMISE she will be ok.
    I was never so terrified in my life. But please do NOT think leukemia, b/c if her red and white cells are ok, it is not it. and I assume she has been healthy up until this point.

    What caused my son's was an attack of a VERY BAD virus - 106 fever. A virus can produce this. None of the doctor's in one of NY's best hospital's even knew what was happening. It was his pediatrician that figured it out b/c he had the same blood disorder.

    PLEASE PM me if you would like to chat, get any info or comfort :) I am here.....and totally relate to what is happening to you right now.
    Cynthia
  • edvedder913
    edvedder913 Posts: 1,810
    http://forums.pearljam.com/showthread.php?t=302374&highlight=Idiopathic+purpura

    Hang in there! and contact me if you need to talk. xoxo
  • chiquimonkey
    chiquimonkey Posts: 9,337
    aw mindi, i'm so sorry :( definitely will keep your daughter in my thoughts, i hope it all works out soon.
  • Lizard
    Lizard So Cal Posts: 12,091
    Hope things are OK.

    I woke up thinking of this.
    So I'll just lie down and wait for the dream
    Where I'm not ugly and you're lookin' at me
  • mindi
    mindi Posts: 1,862
    Patrick, very sorry to hear about your dad. I very much hope he turns around soon and makes a full recovery.

    Cynthia(edvedder913) Thanks so much for posting about your experience! It really makes me feel so much better. I am hoping her 4 pm platelet check shows her platelets are up and they release her and she gets to come home!

    Small update, they have given her an iv med treatment twice now and have given her platelets, despite all of that, her platelet count this am was 3000. Not anywhere near where they want it. Her nose has stopped bleeding, they ended up just keeping it packed my cotton.

    I am not a praying person, but I am praying that her count is high at 4. I want my baby home!

    Thanks everyone!!
    To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
  • Cree Nations
    Cree Nations Posts: 2,247
    :(
    wish you and your daughter the best.
    Sending you good thoughts
    >>>>
    >
    ...a lover and a fighter.
    "I'm at least half a bum" Rocky Balboa

    http://www.videosift.com/video/Obamas-Message-To-American-Indians

    Edmonton, AB. September 5th, 2005
    Vancouver, BC. April 3rd, 2008
    Calgary,AB. August 8th, 2009
  • ladygooddiva
    ladygooddiva Posts: 4,169
    hope everthing will be alright for you and your family
    and that your little is not that sick ...
    hope the message will be good !!!
  • mostdefiled
    mostdefiled Posts: 158
    I'm very, very sorry to hear about your little one. If it makes you feel better, I work in a blood lab, involving transfusion medicine, and there are lots and lots and lots of kids who we provide products for for YEARS- they manage to get by and be fine. I started reading the description of your daughter's symptoms and my heart was in my throat- kudos to you for going with your gut and bringing her in for treatment right away. Have your doctors talked with you yet about you or your husband or older daughter donating platelets for her? You can donate platelets every two weeks- I do, prettymuch, and it might be a good thing for you to suggest to your family and friends.

    You and your little one will be in my prayers, and do know that lots of little ones out there with really scarry diagnosis live long, wonderful lives.

    mostdefiled
    she holds the hand that holds her down, she will rise above!
  • mindi
    mindi Posts: 1,862
    The latest blood check wasn't good. The last thing they have to try is an iv treatment that has a side effect in kids that can cause renal failure. I am not sure when they will be doing it. It only takes a few minutes but I am not sure if they will do it now or wait until me or Ken can be up there. He is on his way home right now to get a few things. My oldest is at work so I can't go see Jane tonight.
    I am hoping that this will work tho because I have no idea what they will try next, not sure if there is another option.
    They are also giving her a blood transfusion because she lost so much blood from her nose bleeding for days.
    I am just broken. Trying to function for my other kids, so glad for my oldest daughter that helps me.
    Jane is in good spirits. She is pale from all the lost blood but is up and playing in her bed.
    My husband has given both blood and platelets before. I am not sure if he can do it right now, he works at a community college and I know they recently had a drive there so he may not be able to do it yet.
    To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
  • ilovesinging
    ilovesinging Posts: 255
    I hope that everything will be better. That is awful. :(
    To Someone Who Needed To Move Their Car:"Congratulations! You win,you get towed!"-E.V.

    ilovesinging-The crazy lady that you catch in detention. Yeah,you can talk to me.
    I am me-I would love to keep it that way.
  • Heineken Helen
    Heineken Helen Posts: 18,095
    can't your cousin help out tonight? I don't mean to press the issue.. but you're gonna need to take advantage of any help offered. Don't be afraid to... nobody would think twice in a situation like this.
    The Astoria??? Orgazmic!
    Verona??? it's all surmountable
    Dublin 23.08.06 "The beauty of Ireland, right there!"
    Wembley? We all believe!
    Copenhagen?? your light made us stars
    Chicago 07? And love
    What a different life
    Had I not found this love with you
  • mindi
    mindi Posts: 1,862
    Heineken Helen wrote:
    can't your cousin help out tonight? I don't mean to press the issue.. but you're gonna need to take advantage of any help offered. Don't be afraid to... nobody would think twice in a situation like this.
    She could if I need her.
    We are good. My oldest will be home in a bit. It's actually easier with just us here, I don't feel like I need to play hostess. My mom and sister are close too. But right now we are good.
    I am just hoping that this next treatment works and she gets to come home tomorrow.
    To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy
  • Heineken Helen
    Heineken Helen Posts: 18,095
    mindi wrote:
    She could if I need her.
    We are good. My oldest will be home in a bit. It's actually easier with just us here, I don't feel like I need to play hostess. My mom and sister are close too. But right now we are good.
    I am just hoping that this next treatment works and she gets to come home tomorrow.
    Yeh, I know what ya mean! Fingers crossed... and I would pray for her right now if I wasn't a bit drunk! So I will again in the morning :o
    The Astoria??? Orgazmic!
    Verona??? it's all surmountable
    Dublin 23.08.06 "The beauty of Ireland, right there!"
    Wembley? We all believe!
    Copenhagen?? your light made us stars
    Chicago 07? And love
    What a different life
    Had I not found this love with you
  • edvedder913
    edvedder913 Posts: 1,810
    mindi wrote:
    The latest blood check wasn't good. The last thing they have to try is an iv treatment that has a side effect in kids that can cause renal failure. I am not sure when they will be doing it. It only takes a few minutes but I am not sure if they will do it now or wait until me or Ken can be up there. He is on his way home right now to get a few things. My oldest is at work so I can't go see Jane tonight.
    I am hoping that this will work tho because I have no idea what they will try next, not sure if there is another option.
    They are also giving her a blood transfusion because she lost so much blood from her nose bleeding for days.
    I am just broken. Trying to function for my other kids, so glad for my oldest daughter that helps me.
    Jane is in good spirits. She is pale from all the lost blood but is up and playing in her bed.
    My husband has given both blood and platelets before. I am not sure if he can do it right now, he works at a community college and I know they recently had a drive there so he may not be able to do it yet.

    Mindi...I am so sorry to hear this. This poor little girl. My thoughts and prayers are with you and your little girl. And hopefully she'll snap back and be back home REAL soon. xoxo
  • phiend226
    phiend226 Posts: 11
    i just read through everything. as everyone else has said, my thoughts and prayers are with you and your family. my nephew had a lot of various health problems when he was younger. kids are amazing with their resilience. your daughter will be home soon and will be stronger and happier than ever. stay positive.
  • dawng
    dawng Posts: 644
    still keeping you and your little one in my thoughts...stay strong.
    Check out my Sudsy Chick Etsy Store for all natural homemade bath products!
  • mindi
    mindi Posts: 1,862
    Just a quick update from this morning. Her platelets are up to 9000 so they haven't decided if they want to wait to see if they keep going up or to do the other iv treatment.
    So far they have done IVIG twice, platelet transfusion on Wednesday night and blood transfusion last night.
    It's looking like she won't be home again tonight, but a slight chance she will.
    To 10c; "Your PJ tshirt should be tight enough to show you're a woman and loose enough to show you're a lady." - bionicamy

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