Thursday, November 13, 2014

UPDATE

I always wonder if Doctors forget to every patient is a ribbon attached that wraps around their parents, grandparents, sisters, brothers, aunts, uncles, cousins.........or do they just see that one part of the patient that is their specialty.  I think there should be a class taught on taking care of the "whole child" and the family that comes through the door with them.

Macey was a superstar with her MRI but alas the all knowing Doctors from Iowa City decided JUST to scan her knee and below.  Even though somewhere floating around in Iowa City Hospital space there was documentation that they wanted the pelvic area and all the leg scanned.  After three phone calls between the radiology staff, the insurance company and the University....well the University won and the insurance company said only the knee and below.  So. That. Is. What. They. Did.

It showed lots of fluid of course cos everything is so big and some possible lesions but not what they were looking for.  So yes we did get one good answer, but actually no answers.

Macey's bloodwork also came back from Mayo and it still had several abnormal readings...all over the place.....SO ....tomorrow her momma and daddy are taking her to Blanks Children's Hospital to find out what is going on with our girl.

WE think this is the parking ramp but we are not really sure just what it is???  It looks pretty kid friendly though doesn't it.  Here is some stuff about it.

Blank Children's Hospital is completely dedicated to meeting the unique health care needs of children. Blank Children's is an 96-bed environment that embraces and encourages families to be a part of their child's healing and recovery. Everything from equipment to decor is designed specifically for children.

Committed to Family-Centered Healing, Caring and Teaching

At Blank Children's Hospital, we embrace a family-centered care philosophy where families are recognized as the most important part of a child's healing process and are encouraged to be actively involved in patient care the constant in children's lives.
 
It is about 2 hours from our home in Des Moines so not to bad, but we wish it was closer.
 
It seems like the only post we know how to write is the ones called UPDATES and we have lost the ability to write anything enjoyable, or funny......we are sorry for that to our readers. 
 
WE also know there are friends out here in blogville that are suffering from losses in their family and we want to acknowledge them also.  I know their family here in blogville is helping them stay strong. 
 
I think blogville should take turn teaching those "Whole Family" classes at those fancy doctor schools.  WE understand the importance of ribbons, and balloons, and hugs.  We understand the importance of holding each others hands, drying our tears, and feeling with our hearts.  Yep, we would be the best teachers.
 
Stella Rose and Momma

38 comments:

  1. We do understand just what you're going through because we're kind of going through the same thing with our grown-up daughter. So many doctors--and no answers. And no genuine interest in taking it one step further to find the problem and offer a solution. Our prayers go out to Macey and the entire family in the hope that a Children's Hospital will be more compassionate and find the answers that are needed to treat Macey and help her recover completely.

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  2. We totally agree that the entire health care system is confusing, disappointing at times and not friendly. We bet you have much better luck at this new hospital.

    Hang in there everyone, all of us are praying really hard!

    Hugs,
    Lily Belle & Muffin

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  3. Doctors for you. Sounds like over here and most could do with basic lessons in good manners. Poor baby. We have our fingers and paws crossed that this time they get to the bottom of it.
    Best wishes Molly

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  4. We are keeping all of you and especially MACEY in our thoughts right now. Our paws are getting a little numb from staying crossed so much!

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  5. Hmm, that kids hospital looks like a Fun House!

    Hey, because we care, we want the Updates even if that's all you have. We are concerned about Macey. We want the doctors to find out what is going on with her.
    We want you, the whole family to know we care and are sending prayers your way.
    -Zoe's Mom-

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  6. Wow, I totally agree! We would be so very caring and helpful and understanding if we were in charge of all things medical. Sending lots of POTP to Macey and warm hugs and vibes to all of you.
    Grr and Woof,
    Sarge, Police Commissioner

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  7. Your heart and mind are where they need to be - with Macey and your family. We agree with Zoe - we appreciate the updates cause we love you and care about you and little Macey - and know that we pray for her every day
    love
    Linda & the kids

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  8. Sheesh, it is amazing that they can't diagnose this yet! We totally agree with the whole body and while family thing. Hopefully Blanks will be a different experience. Still praying for a diagnosis and effective treatment!

    Your Pals,

    MURPHY AND STANLEY

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  9. Mom Kim here - Gotta also get the ^&%$%& INSURANCE peeps to lighten up and let go of some of their precious funding so that things like the MRI can get done the way it NEEDS to be done. Just the bloodwork from Mayo alone tells me Macey NEEDS a whole body MRI.

    Ok - take a deep breath - calm down, relax. I'm sorry - I had to vent. I'm not a doc but between me and family, I do know some about insurance companies. NOW - it is gonna end up costing the insurance company more because if they had approved the MRI the way it should have been done in the first place - it would not need to be repeated. (better watch it, starting to vent again - sorry) I hope and pray that just maybe, the doctors at the childrens hospital can figure it out WITHOUT doing an MRI. Sounds like finally Macey and her family will get some answers they have been needing - oh I pray they do. Little Macey deserves to get better - she has gone through so much - it needs to stop now.

    As for posting what you do - totally understand. Sometimes things like this consume us and it is almost impossible to find anything else to post about - been there, done that. You all just go ahead and post whatever you feel is right. Besides, we all in Blogville want to know what is happening with Macey too.

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  10. OH MY WORD...BETWEEN INS AND DOCTORS WITH TUNNEL VISION YOU ALL MUST BE SCREAMING AND YELLING. THOSE DOCTORS NEED TO THINK HOW THEY WOULD FEEL IF IT WAS THEIR LOVED ONES GETTING JERKED AROUND. PLEASE GIVE EACH OTHER LOTS OF HUGS AND LOVE FROM MADI AND MOM

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  11. It seems all so wrong! I have wondered if doctors harden their hearts to be able to "do their job". Perhaps many have forgotten to treat the whole patient and their support system! I have always found blogville to be a place to write my heart...whether happy or sad. Those that want, listen. Please don't feel the need to be funny for us! We continue to hold Macey and your family in our hearts and prayers. xoxo Punchy

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  12. Oh good grief ...that's crazy. Did I mention how much I dislike insurance companies!

    But on a positive note ...I have a good feeling about the children's hospital. It looks like a wonderful place and I'm sure as a children's hospital, they will be trained to treat the whole child/whole family. My daughter has had two minor surgeries at the children's hospital near us and both have been filled with wonderful, caring staff, nurses, and doctors who understand children. I hope you will find the same tomorrow.

    Please keep updating ...we are all here and concerned. Heck, I check your blog first thing in the morning and last thing at night hoping for updates and news on sweet Macey.

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  13. We care about you and your family, not about Update headers on the blog. Me and my kitty girl Callie are sending warm hugs and wishes from New Jersey that little Macey starts feeling better and your family finally gets the answers you need about her diagnosis.

    xoxo Patty

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  14. Dear Macey
    Do you know what I think? I think you are brave!
    And you are braver than me when I was sick.
    I think maybe you have a magic cape and magic wand, that only you can see.
    And I think everyday you put on your magic cape,, and grab that magic wand,, and sprinkle magic 'brave ' dust everywhere you go.
    Some day maybe you will show us all your magic wand!
    Yep,, I think your a brave girl to go see all the doctors.. And maybe you will leave some magic dust everywhere you go, so other children will be brave like you.
    love
    tweedles

    ps... to Deb,, We have a wonderful Childrens Hosp, clinic called Dornbeckers in our big city.. and its a happy place for the whole family,,, and knowledgeable doctors,,,,just like your Blanks Hosp., and doctors,, for children!!
    Everyday we hope for answers,,, and we keep sending all our prayers for Macey.
    love
    tweedles

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  15. Gotta echo Zoe's sentiments, we care about all the family and your updates are appreciated. Your humor will come, as it always does, when it's appropriate. Now its all about getting Macey well.

    Love, Gampy

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  16. We r thinking of u things should be better at children's hospital
    Retro rover

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  17. Zoe's Mom said it all. Crikey we NEED updates!! The first place Mum goes EVERY morning is to the Blogger dashboard to search for updates on Macey. She might not have time for anyone else but she sure finds time for Macey. She also wants to kick some butt in that Insurance company. Soooooooooooo frustrating!! AND a little girl's life is at stake!!!!! Shame Insurance company ....... shame!!!!!!

    How fantastic is Tweedles, aye??

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  18. 'Specialist' just shouldn't apply to a child. It's bad enough for adults. So blinkered. We know Macey will have the family's support, but we're here in her corner, too.

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  19. Ma was a nurse and she says *&$#@%*! insurance companies! I don't really know what that means but from her tone, those insurance companies better run for the hills! That hospital really does look kid-friendly...and they seem centered on "family" care not just patient care. You are all so very strong. I hope our prayers and thoughts are lifting you up...if only a little bit.
    Oz

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  20. We have our paws crossed that the new hospital will figure out what is going on. We know just how frustrating it can be. Our mom has been struggling to find an answer to her health problems for about 10 months now. You just hop from one doctor to another and hopefully get closer to a solution. At least for our mom she is an adult and has a better ability to understand all of what is going on. Not that she is happy that it has taken this long though.

    We appreciate all the updates and will be glad when your life can get back to the funny side. For now we will continue our crossed paws for Macey and the rest of your family.

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  21. We are continuing our POTP times four and Mama and Daddy are praying real hard that the doctors find out what is wrong with Miss Macey real soon!!!!!
    Smiley Hugs!
    Dory, Jakey, Arty & Bilbo

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  22. We are glad that you got SOME RESULTS Back....
    It is a shame that the health CARE systemS manage to Forget that IMPORTANT word... CARE...
    We have our Paws Crossed that this hospital and their "PEEPS" will show all of you WAY more consideration.
    POTP for our MACEY.

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  23. Well if we could, we would comw and sit and hold your hand....yes sometimes them Docs ain't got a clue how much support...both ways does good. We still gots our bestest POTP going here!

    The Mad Scots
    Pees: you tell Angus all is ok with us......if things take time we will still let him be a police officer.

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  24. Never ever worry about keeping us updated! I hope in some small way you were able to enjoy your birthday today, and it sounds like Blank is the way for Macey to go... so hopefully this will bring some answers!

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  25. Sometimes it seems like it is easier to get treament for a pet than it is for humans. That makes no sense at all for them not to have done a more complete MRI!!! Between doctors and insurance, it is wise not to get sick these days. One of these days they will get it right for Macey - let's hope that time is NOW.

    We too are continuing those crossed paws and prayers.

    Woos - Phantom, Ciara, and Lightning

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  26. So sorry there is still no answers. My heart aches for Macey, you and your family. We have come to care about and love our friends in Blogville so keep the updates coming and we will continue to send good vibes and continued to say prayers for Macey and the family.

    Aroo to you,
    Sully

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  27. I am so sorry that the medical system failed to do what they should have done. I have found that, in the past 2 yrs or so, doctors have become even more myopic than before. I suffer from cluster migraines, and many different parts of the body can contribute. But, no one seems to see me as a whole person, just the part that they're interested in.

    I really hope that Blank Hospital figures things out for Macey and all the rest of your family. I feel for you, with it being so far away... That's tough. But, if Macey gets great care, then it's worth it.

    Thinking of you...

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  28. Oh Mates. We can only say you are in our hearts and we hope things get better or at least you get answers from these tests. Your Insurance company makes us want to growl and growl. We don't understand why dear little Macey isn't given the tests and treatments she needs!!
    Slobbery love to you Macey. Yes, I know it's slimey, but it is full of love for you little darling.
    No worries, and LOVE, Stella and Rory

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  29. We saw on Easy's blog the horrid time your family is having..all we can do is send our love from Down Under and hope and pray that the Dr's can help give you all the answers and solutions to Macey's problems..children should never have to go through this...all our love and hugs Fozziemum

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  30. please update us as soon as you hear more...

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  31. I'm so sorry that you got no answer. I hope the childrens hospital will find the reason and I hope for really good news for Macey and for you. It seems all insurances of the world are casted in the same mold....My paws are still crossed for your girl and for your whole family.

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  32. Waiting is so hard, especially for a child. You want to know what is going on and how to fix it and the waiting game continues with the doctors and tests and insurance permissions. Sending a big warm hug!

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  33. Dear Stella Rose and Mom. I work in the medical field and can tell you how frustrating it is. Yes, doctors become very narrow sited. Insurance companies should not be making health care decisions but they are. I am praying that this next visit is the one that brings it all together and gets the answers for you all. Make sure you take copies of everything you have and just keep PUSHING for what you need. It gets tiring I know. I have been there myself. But you MUST have answers and the only way to get them is to keep being the squeaky wheel. Sending you love, encouragement and courage. It is all I have to offer but I am sending it every day and praying every night!
    Marty's Mom

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  34. That looks like a castle to me. I wonder if Snow White, or Cinderella have been in that castle. I wonder how many magic wands are hidden in secret passages?
    love
    tweedles

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  35. Keeping our paws crossed for your sweet Macey!

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  36. Signs and Symptoms for Children's / Pediatric Lymphedema

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  37. Continuing to pray for sweet Macey!!!
    Cammie!

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  38. Sending prayers from Texas dat dey finds whut is wrong wiff Miss Macey and that she is on da road to recovery real soon......

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