Thursday, November 6, 2014

UPDATE

Our Yahoo is acting up and I know our friends are wondering about Macey and what happened yesterday.

FURST and most important all your prayers and good words uplifted Macey and us in every way possible.  She laughed and laughed.

They were unable to get the MRI done though.  First the sedation did not work well enough and she coughed a few times, thus making the picture of the first MRI unreadable....it caused a domino effect as to the timing of the rest also, they even tried to do one with no sedation and she tried real hard not to move but it still did not work.  Because they are booked so solid, we could not even wait and come back in a few hours.  We ended up waiting till after 1:00 in the MRI lab to see if they would just admit her. 

The insurance would not admit her because two MRI's in one day with no diagnosis yet, or no actual DR. is a no-no.  Yep we found out that at the moment, she has no dr.  The cardio guy is done with his job and the kidney girl is done with her job, so macey is basically floating around in their system without a home. 

So we went back up to pediatric specialty clinic and waited for the kidney girl to come back to see if she could help.  Another 2 hour wait.  Poor Macey had not eaten since midnight or drank.  We could not give her anything just in case they could redo the MRI.  she was the best little sport.

Finally, the kidney dr. decided to send her home to have an MRI done here, and our local clinic would read it, along with Iowa City.....after they see something (or don't see something) then they will know who to send her to next. 

The new thing is now her blood work.  Since two weeks ago she is anemic.  Another new thing she never has been.  Macey eats very well, and that has never been an issue.  So in the 8 weeks that this first started she has a heart murmur, wonky ekg, blood in her urine, anemic, big foot and calf.....we are beyond worried.  Just beyond it.

So on Tuesday she has another MRI, but thankfully just a few miles from her home.  No long traveling.   We are trying so hard to think of the simple things it could be, but we can't find them anymore, and now our minds are traveling to the darker side. 

Today at work all I could do is cry and cry.  My boss didn't know what to say to me, so he just ran out the door to Court.  (llolol...)  Oh yeah, as far as our election went he lost the race, so come January I no longer will be the assistant secretary....but money is replaceable....people are not.

We will be answering all your wonderful blogs and comments you left for us yesterday, in time.  We will also let you know things as we find out.

Deb

31 comments:

  1. Oh my goodness I am so sorry you gave a do overBut I have known many adults who have issues staying still. I hope the next MRI goes smoother no long travel should help. Thank you for taking time to update us. Prayers are coming.
    Hugs Madi and mom

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  2. Well, I am PUGsonally keeping my JUJU tutu and wings ON just in case the later becomes sooner!
    Love you
    Noodles

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  3. We are so sorry for all that is being thrown at little Macey. We hope the next MRI goes smoother and all this nonsense disappears and she okay! xoxo

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  4. I know how very hard this is for Macey and all her family. We have had several grands that have had severe health issues. I am praying for her.
    Hugs,
    Noreen

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  5. how frustrating. sending you hugs and prayers, Deb.

    Edgar and his mum

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  6. We hate that she has to go through this again.... but now she knows what to expect... and it is CLOSER to home... those things will make it EASIER on her..
    We appreciate the update... we hope that this Mystery can be easily Solved and easily REsolved.

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  7. Thats a boatload to think about!
    Were glad she will have an MRI closer to home... Answers are somewhere. Macey is being so patient-- and its hard to be patient for even an adult!
    And of course the prayers and good thoughts keep going to Macey.
    love
    tweedles

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  8. Hopin that things work better next time and the doctors can get this figured out. Big hugs to y'all and Macey especially.

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  9. Macey is being such a little trooper about all this! Poor thing must have been so tired and hungry.
    I know it is hard for the family to not show your worry and frustration with the whole ordeal when it concerns your precious Macey.
    Prayers and thoughts for all of you.

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  10. I don't know what to say this is just a nightmare Im thinking of you

    retro rover

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  11. Well, that is just maddenin, all that waitin an nuthin much got taken care of.
    What a trooper Macey is! Wow!

    Yu know we will keep on prayin!

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  12. Oh dear! The health care system (or should I say, lack there of) leaves a lot to be desired. We too have all been thru the ringer here with it.

    Don't worry about all of us in Blogville! You take good care of YOURSELF and your FAMILY!! We appreciate the update and know that you probably shed many a tear typing it. You and Macey are in our daily thoughts and prayers.

    Hang in there and stay strong for Macey! Give her a big hug from all her friends here in Upstate NY.

    Love,
    Lily Belle, Muffin, Kim, Rolf & Grandpa Bob

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  13. What an ordeal for ALL of you. Sounds like Macey is a little trouper! Try to stay away from the Dark side. Just give her lots of cuddles and love.

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  14. I have been thinking about your family all day the past two days and checking frequently for updates. I hope the answers are found soon. Hugs to you all.

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  15. Oh no. We are here and continuing to send our love, healing vibes and of course you are all in our thoughts and prayers.
    Best wishes Molly

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  16. The health care system just isn't what it once was. I understand the frustration you and your family are feeling right now because I'm also still living the nightmare with our daughter and her Lupus and seemingly lack of doctor interest in finding a treatment plan to make things easier for her. Macey has all our prayers and hugs for a quick diagnosis, treatment, and full recovery.

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  17. Oh mi goodness, what a time your family is having. I'm sending all the #JerseyStrong positive vibes and good thoughts I can that your little #MaceyStrong will be ok.


    Hugs, Patty

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  18. Mom Kim - back at work today so need to keep this short. My first thought - thinking of Macey and so hoping that all the doctors can finally get their act together to figure out what is going on. Oh do I know what it is like to deal with them and all the insurance and everything in between - all the red tape. I wish I could have posted something but my time online has been very iffy the past few days and will continue to be that way for at least a few days more. Please know that we at Team Beaglebratz are thinking about all of you and hoping and praying for the best for little Macey and all of her family (that includes you all too)
    And thank you for the POTP for me - like I said I am back at work so there has been a little improvement.
    Mom Kim

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  19. This has just been such an ordeal for your family. We hope the medical peeps can get their act together and find out what is going on with Macey. All paws continue to be crossed and lots and lots of prayers from Mom.

    Woos - Phantom, Ciara, and Lightning and Mom

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  20. Isn't bureaucracy wonderful? Medical bureaucracy especially. I hope everything goes well for Macey and she can get on with the happy life of a little girl.

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  21. What a a trooper little Macey is! We can only imagine the frustration and fear of all the adults. We will pay for a a diagnosis and treatment!!

    Your Pals,

    MURPHY AND STANLEY

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  22. We are thinking of you all and keeping our paws crossed tight that everything works out.

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  23. I understand what you are going through with the waiting and confusion. I have been there with my husbannd and my heart goes out to all of you. I am praying for Macey and what a beautiful and brave little girl she is. Sashy has paws crossed and POTP is amazing. I know this from all the love and support i have gotten. Take care, be strong and prayers and love are on their way. Sasha sent a fresh batch of magic bubbles.

    Anne and Sasha

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  24. Poor little Macey. What a brave little girl! I am glad our posts helped her the other day...and I am keeping her in my thoughts and prayers every day! POTP to all of you.
    Cairn cuddles,
    Oz

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  25. How frustrating! We are sad things didn't work out with the scheduled test, but glad she will be able to get one closer to home. We saw a few of the funny posts on blogs. You were all in our thoughts, but we are still having computer woes and are just taking things as they come. We hope an easy to treat diagnosis is forthcoming! Hugs.

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  26. We are keeping the prayers and POTP coming...hoping things will sort out very soon!

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  27. POTP still coming your way. Macey is a sweetheart and we're wishing all good news for her!

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  28. Still praying every day for you all. Hopefully things will go better on Tuesday. You are in my thoughts and prayers every day.
    Marty's Mom

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  29. Dear Macey and Family,
    Meee learned about your situation from Angel Pip's Mom, Kristin and came over to let you know that Meee and my Pack started praying for you. We are asking God to wrap His loving arms around you and heal you with His miraculous healing light. We are also sending prayers and healing vibes your way and will continue to do so until you are healed.
    Hang in there sweet Macey because Meee knows that God loves you very much and is working behind the scenes to make you whole and pawfect again just the way He created you.
    Sending Love, Blessings and Smooches,
    Neeko and my Pack ♡

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