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Thread: Update on our totally overwhelming day! UGH

  1. #1
    Ihostmom2mitchandnick Guest

    Default Update on our totally overwhelming day! UGH

    First I must say UGH! I know I have said it before...I have reached my limit......so please dear God.....listen to me! Please!

    Nicholas has to go back up next week for the IVIG transfusion. He had dropped from 735 to 573 in two weeks. They dont like their kids to drop lower than 500. Salt Lake lets their kids drop to 400. That being said....our doctor thought it best to wait until next week to see how much he drops in a week. She thinks...."Thinks"....he will be fine "fine".....until then! UGH!

    So....ok. It is 4th of July holiday and all!

    He also has high blood pressure again. It was a little high last visit....and then again today. We are going to keep a eye on it and if it gets worse...back on meds we go. She thinks it could be a long term thing.

    His retic count was 2.3 today. His retic count is what lets us know if he is hemolizing. The Salt Lake docs dont want him higher than 5....when we left, his retic count was .5 So I say "OMG His retic count is TWO POINT FIVE"!
    His doc looks at us and says "It is much better than two weeks ago when it was 3.7"! YIKES! At least it came down all by itself. UGH UGH!

    They also want his eyes checked in the fall.

    We go back next Thursday......

    So I call my mom to check on my dad......he does go into surgery tomorrow at 11:30 for his brain surgery. My little sister is on her way from Spokane (where I just was)...and I will go down in the morning, drop off Nicholas with his dad, and go to the hospital with my two sisters and my mom. Please keep dad in your prayers. His name is Bob. My mom did say that the clotting issues were resolved, but now they are worried about blod clots. I will know more tomorrow.

    Sister number two....drove her 18 year old son (my nephew) to rehad today for heroin addiction. The rehab center is 2 hours from her house, and my nephews girlfriend entered rehab as well. We arent sure where she is tho....as her family took care of her. We all knew he had a problem....but would never accept help. His dad commited suicide 2 years ago.....my nephew found him and he has been a mess ever since. What a mess. My family is such a mess. I feel like my life is a fricking soap opera....but you know what....I could not even make this crap up......couldnt even think of this on my own. Good gosh!

    The one highlight of having to spend 10 hours with my ex husband in a hospital filled full of adorable children with cancer.....is that the doctor said that Nicholas could go to the park for the 4th of July fireworks. We have to stay away from large crowds and not let anyone handle him. You can just see how my day went.....
    I raced home to check on Aundy.....and I would really like to do something for her and her family.. I so know what it is like when the unexpected hits and keeps going!

    I will post sometime tomorrow.....Big hugs to you all!
    Mary Ann and Nicholas
    Anyhoo......When Doug got home.....I swooped in for many hugs......so did Nicholas......AND>>>>>>>I grabbed a wine cooler! Woo hoo for me!

  2. #2
    JoyKS is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006
    Posts
    1,608

    Default Been thinking about you today.....

    and hoping things went well for Nicholas and your Dad. Whew....girl, I don't know how you keep up. First, I am glad things are ok for Nicholas. Glad they are staying on top of his IVIG and glad his retic count went down. I will pray it all continues!

    And I'm thankful your dad can have his surgery.....and will say my prayers that things go perfect for him and that he sees lots of improvements soon. I know how stressful that must be!

    As for your nephew, I'm so sorry. That must have been a horrible stress on him the last two years. I pray that he gets the help he needs there. Poor kid.

    Well, enjoy your guys tonight....and know that I'll be praying for your father tomorrow. Please update when you can, MaryAnn.

    Many hugs,
    Joy & Lukas

  3. #3
    Ihostmom2mitchandnick Guest

    Default Thanks Joy

    I have been up and at em since Doug left for work at 3:30 this morning. Nicholas "peed" me out of bed....so I have laundry going already! Of course...my sweet little angel is sleeping soundly now that I have him in dry clothes and a dry bed! Little stinker!

    Yesterday was a rough one. Not sure today is going to be any better.
    Rob lives right above my neice and nephew in his apartment building. My niece has 3 little boys....6,5,4 in age! Dont ask!
    My nephew helped take care of them while she worked. You would never have known my nephew was on heroin. He went over to my parents house last weekend to help get my dad off the floor when he fell. He is a great kid...very handsome....about 6 feet tall and Nicholas just adores "uncle Anrew". It is weird.....I had no idea any of this was going on yesterday morning, and Nicholas kept asking where "Uncle Anrew" was.

    Anyway......pretty stressed about hanging out at the hospital today. Not a good place to go when I have Nicholas to pick up and bring home. Mitchell and I are headed down to sit with mom and my sisters a little later this morning. Rob will watch Nicholas. I am hoping to kidnap my little sisters son Harleigh ( his little sister is Hannah, both named after my grandparents) as Nicholas just adores him as well. My neices and nephews are the only kids that Nicholas has ever played with. My nephew is 10 and Hannah is 8.....they follow Nicholas around like mother hens! Very cute!

    Nicholas is going with his daddy tomorrow night until Sunday for Rob's visitation. Doug, Mitchell and I are going down tomorrow night to visit dad at the hospital. And then we are hoping to take Mitchell high up into the mountains to ride in the snow again. Doug has 4 days off.....and we are going to try and make the best of it......unlike our memorial day. This holiday...we are trying to stay in the same state!
    On the 4th we will take little Mr. Nicholas to the park for fireworks.....get this........drum roll please............................................ ..........

    It will be the FIRST time in 2 years that Doug, Mitchell, Nicholas and myself have been out in public together as a family! Yikes! I can hardly wait!

    The thing that most families get to do everyday.....I finally get to too! Woo Hoo!

    Please keep my dad in your prayers......Nicholas too! I have Mitchell with me until the 10th of July.....Nicholas's birthday! Nicholas's birthday party is Next Saturday afternoon at mom and dads! My little boy is gonna be 5!

    Big fat sunny Idaho hugs,
    Mary Ann and the boys

  4. #4
    Join Date
    May 2006
    Posts
    110

    Post (((MaryAnn)))

    I haven't had time to post or get on the boards over the past few days but I do think about you and Nicholas and keep you in our prayers. I've also included your Dad too...I wish there was something I could say. It just seems like it's one thing after another. I hope you get some breaks soon. They say it's always darkest before the dawn. Maybe better days are ahead. I sure hope so. I'll continue to pray for your strength and the health of your family. I hope you get to enjoy the holiday and Nicholas gets to see the fireworks. Take good care...

  5. #5
    Ihostmom2mitchandnick Guest

    Default Thank you very much

    I am praying you are right. One step forward...two steps back....I just need our lives to take a few more step forward! I just have to realize that getting Nicholas better is going to take much longer than the doctors thought.
    Every day....I wonder how in the world my life turned out this way. I just dont get it. Thank you for the prayers....
    Big fat hugs,
    Mary Ann and Nicholas

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