Moody/Karens daughter Olivia

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  • Linda54
    Linda54 Member Posts: 2,689
    edited April 2009

    Thank you God!!!!   I checked that website and it sounds like her symptoms.....I do pray that is it and no more test, just meds to correct the condition.....((((Olivia, Karen and family))))

    Dejaboo, loved the poem.....I am going to copy it to keep....thanks

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  • livesstrong
    livesstrong Member Posts: 1,799
    edited April 2009

    Moody -  what a bittersweet day indeed.  So sorry to hear of the loss of your furbaby.  It is never easy to let them go.  But I am so happy that you are FINALLY getting the answers you have been searching for.

    Hoping for continued good news...................

    Valerie

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  • livesstrong
    livesstrong Member Posts: 1,799
    edited April 2009

    Pam - that poem brought tears to my eyes.  It definitely is a keeper.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2009

    Oh, Moody, what good news about a diagnosis for Olivia! How is she taking that news? Thank God for this very quick and caring doctor!

    And I'm truly sorry about your loss. The emotional drain must be tremendous. Prayers for a restful night for all of you, despite all,
    Binney

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  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited April 2009

    Wonderful news about Olivia's diagnosis!  I've been out of town on vacation, and was hoping for good news when I came back.  How wonderful that it's treatable! 

    On the other hand, I'm sitting here with tears running down my cheeks over the loss of your little Gretel.  Dejaboo, your poem just about ripped my heart out!  I lost my little dachshound two months ago, and it's still so fresh in my mind and heart.  I'm so sorry for your loss, Karen, Olivia, and family! 

    Love and hugs,

    Karen

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited April 2009

    Karen, when I was younger I had back surgery that kept me flat on my back for 4 months. They used a tilt table to gradually get me me back sitting and walking. They didn't want me blacking out due to the drop in my blood pressure after being flat for so long when they sat me up. It is not a bad thing. Tell Olivia that when I was on the tilt table, I was laying flat but gradually tilted to the upright position.

    Sheila

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    That is great that they were able to diagnose her so fast!  What a relief to finally know what is causing the nausea.  :)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Meant to add that I'm so sorry for the loss of your pet.  Pets are part of the family and the loss of them leaves a huge hole. 

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  • X3sMom
    X3sMom Member Posts: 214
    edited April 2009

    Karen, I'm sorry for your loss.  I'm sure in 13yrs. you have a lot of happy memories to hang on too. Dogs are wonderful. I think God made them as pets because they teach us about unconditional love. Because of that....maybe we can understand a little better God's love for us!

    Remember:

     Eccl 3:1-8

    There is a time for everything, and a season for every activity under heaven:

    2 a time to be born and a time to die, a time to plant and a time to uproot,
    3 a time to kill and a time to heal, a time to tear down and a time to build,
    4 a time to weep and a time to laugh, a time to mourn and a time to dance,
    5 a time to scatter stones and a time to gather them, a time to embrace and a time to refrain,
    6 a time to search and a time to give up, a time to keep and a time to throw away,
    7 a time to tear and a time to mend, a time to be silent and a time to speak,
    8 a time to love and a time to hate, a time for war and a time for peace.  NIV

    Now, you are mourning. I'm praying soon Olivia will be healed and it will be your time "to dance"!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Karen - I'm so sorry about the loss of your fur baby.  It's so hard to lose a pet -  I lost one of my dogs when I was going through radiation treatments and it was just awful.

    I'm really happy and excited though that it looks like Olivia has a diagnosis and that it's something easily treated.  That's got to be a huge relief for you and your family!!! 

    Hugs,

    Doreen 

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  • Journey
    Journey Member Posts: 905
    edited April 2009

    Oh my gosh Karen - an answer that makes sense!  Reading the link you gave was like reading over most of Olivia's symptoms that you have shared with us for the past several weeks.  Oh, I am so relieved that you are close to having this under control.

    All us ATL gals will need to try and meet up once you feel up to it!

    - Gretchen

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Karen, sorry to hear about your loss.  Prayers are going up for your strength during these trying times.  Glad your trip was uneventful.  Looking forward to hearing good news regarding Olivia.  Hugs and kisses to all of you.

    Phyllis

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  • Marple
    Marple Member Posts: 19,143
    edited April 2009

    Olivia, Karen........I hope tomorrow's test shows what it should.......or shouldn't.

    Gentle hugs.

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  • spar2
    spar2 Member Posts: 6,827
    edited April 2009

    All I can say is YES YES YES on Olivia.  So thrilled it is something that can be treated.  What a blessing.  Very sorry about losing your pet, I know how that feels and pets are family.

    Dejaboo, what a wonderful poem. 

    Lots of hugs and love and prayers coming your way.

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited April 2009

    Karen, my goodness so much has happened since the last time I posted for you.

    I've caught bits and pieces from this zip code and that.

    I'll be eager to hear the next update. This doctor seems to be on a path of a positive dx and for that progress we celebrate with you.

    These weeks have been harrowing and full of ups/downs/drama/and so much unknown. I'm so sorry for the timing of so much loss compiled on top of all the other challenges that you've faced.

    Our prayers continue as the treatment unfolds.

    Please know that we are all here cheering for you. Do whatever you can think of to be kind to yourself. I know that I can usually hold up in the emergency, but then come unglued in the aftermath.

    Strength and courage. Strength and courage. Strength and courage.

    xx00xx00xx00xx00xx00xx

    (((((((((((((((((((((Olivia)))))))))))))))))))))))))

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  • honeygirl
    honeygirl Member Posts: 1,718
    edited April 2009

    Olivia , I'm sooooo very happy to read that you have been diagnosed and they can start treatment soon. I knew God would answer our prayers. I will continue to pray , that all good things shall come to you and your family. Take care sweetie.

    Hi Karen , I'm really sorry for your loss of sweet Gretel. What a sweetheart she was. I'm glad your son Drew was there with you. I did the same thing not to long ago with my precious cat "honeygirl". Gods greatest blessings sometimes , are the four legged kind.xxxx Melody

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited April 2009

    Well, as weird as this may sound......"Yea!  Olivia flunked the test!......."  Okay, on a serious note, the "table tilt" test went as the GI doctor expected, complete with Olivia passing out! 

    Her testing required her to have an I.V. because of the likely hood that she has POTS was very strong, and I guess people that have POTS will pass out during the test and an I.V. helps to keep them stabilized and gives the nurses immediate access in case further meds are required.

    Sure enough, about 20 minutes in the upright position, Olivia passed out cold.  The reason was her heart rate stayed too high and her blood pressure bottomed out.  She was soooo pale when they brought me into the room.  And I mean pale from her head too her toes, white as a ghost!  But they were "excited" because they have it all documented in the data.....

    At the beginning of the test, she was lying completely flat on the tilt table with about 10 electrodes connected to her chest and back area.  For the first 15 min or so she stayed in this position and her heart rate was averaging about 77 - 80 bpm.  Then they made me leave the room because they only want medical personnel in the room for the rest of the test.........

    So, I can only tell you what they showed me on the monitor and what they told me happened once testing was complete:

    The rest of the test took about 45 minutes.  I do not know if they gradually inclined the table or took it to various degrees and hold, but they were only able to go 70 degrees up (90 degrees would have put her straight up) because of how high her heart rate was.  Her heart rate was min at 120bpm and max was 148bpm.  They only needed to document a 30bpm increase from her resting heart rate for 10 min to confirm diagnosis, and she was 40 to 60 bpm for 45 min. Her respirations remained calm and normal throughout the test.

    Now of course the people conduting the tests said they couldn't give me the "official" diagnosis, but they said that we can go home relieved that we have one.......The guy running the equipment said they are seeing more children with this condition, but he said she was the highest he had ever seen.....

    There were 3 female nurses and 1 male nurse in there for her and none them could believe that no one at Scottish Rite investigated this.........I told them "hard for the SR people to get past the "all in her head" attitude to think about exhausting every single possibility."

    Am I unhappy with the "specialists" at Scottish Rite?  No.  I am to angry with them to be unhappy.  It is RIDICULOUS that we had to travel 5 hours away from home to find out what they should have found out.

    Olivia's only advocate (medically speaking of course) has been her pediatrician here in Gainesville and thank God Dr. Johnson was willing to do whatever it took to get her diagnosed and treated!!!  He got us into Wake Forest and got her appointment moved up with the "urgency" phone call.

    I guess I will stop venting now and stay focused on the positives of finally knowing where to go from here.

    I wish I could accurately describe the change in Olivia's demeanor since Monday.  It is like the weight of the world was lifted off her shoulders.  To say she feels relieved it putting it mildly.  To say she is grateful is putting it mildly.  To say she finally feels optimistic about her future is putting it mildly. 

    So I will start getting recommendations for pediatric cardiologists either in Gainesville or perhaps Emory.  If anyone has any recommendations, please let me know as I know of NONE.

    The GI doctor at Wake Forest said he would recommend her either not going back to school this year or at the maximum, half days.  So I have a call into her pediatrician to get the proper paper work for her school to try the half days.  He said until we can get her going on medication, she cannot physically handle a full day at school or she would most likely end up in the hospital again.

    Her malnutrition also has him concerned and said there is a possibility of a feeding tube if she doesn't start putting weight back on once treatment starts.  She weighed in at a whopping 79.2 lbs Monday morning at the hospital.  She is 5 feet tall and should weigh 95 - 100 lbs.

    We got home about 7:45pm tonight.  I didn't want to get out of the car.  I couldn't stand the thoughts of going inside with out my little Gretel.  I can't stand that she isn't laying here beside me, and her little bark and the cute little circles she would turn while I fixed her food.  And she was doing all this as early as Saturday morning.  I just can't believe she is gone.

    Drew has been sick all week too.  When we left Sunday, he was running a fever of 101.  I called my mom and she got here to stay with him about 15 min after we left.  He has had a fever of 99 - 101 up until this afternoon.  He finally feels better.

    This week has been the pits.  Grieving for my Gretel, worried sick about Olivia, praying for answers, worrying about my son, even though he was in better hands with my mom, I am pooped out.  I think I will try to sleep for about a day and warn anyone against waking me.....

    BUT,  I cannot say enough about the people in North Carolina.  Every single person we came in contact with, from housekeeping at the hotel to Dr. Fortunado, was the nicest and best mood people I have seen in a long time!  Every place of business we walked into, I mean every single person acted like their life was complete now that they had met us.  I told Mark, if we ever have to move any where, I want it to be Winston-Salem.

    I will close this novel by saying:  "To every single parent reading this, please be advocates for your children.  Don't EVER let an "expert" or "specialist" dismiss you when you KNOW something isn't right.  Don't EVER settle for their "explanation" just because of the title in front of their name if you know in your GUT some thing is wrong.

    I shudder to think what could have happened to Olivia in gym class or dance class or outside riding her bike if I had not listened to my gut and continued to not let up until I got some answers.  Be willing to do whatever and go where ever you have to.  Don't be afraid, ashamed, or intimidated. 

    Give it to God, then listen to Him when He tells us what we are supposed to do.  Pray for wisdom and strength and courage.  He answered our prayers a long time ago, it was up to me to be patient and pursuant to receive it.

    I give Him all the glory, all the praise, all the worship, as He is the One who deserves it all! 

    THANK YOU GOD!!!!!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Wow, you have certainly been on a long journey.  I'm so glad you finally got some answers.  I'm so sorry about Gretel. 

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited April 2009

    Hallelujah.

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited April 2009

    Karen. Thank you for giving us a complete report -- even tho your exhaustion must be bordering on delirium. We will continue the prayers now for the 'perfect' specialist -- who is the 'perfect' match for Olivia & for support and bedside manner.

    Know that you are in my heart as you travel forward.

    Now. Take good care of yourself.

    xx00xx00xx00xx00xx00xx

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited April 2009

    Karen - praise God! I'm so relieved for Olivia and you that you got the answers! You are an amazing mother - I hope you'll be able to find some time to relax and pamper yourself - you deserve it! And I'm so sorry about your sweet little Gretel - someday you'll meet again, I firmly believe that our heaven includes the pets we have loved and lost. May God's angels continue to watch over you and your family!

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  • rockwell_girl
    rockwell_girl Member Posts: 1,710
    edited April 2009

    I'm glad to see you finally got some answers

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  • kbugmom
    kbugmom Member Posts: 15,189
    edited April 2009

    Praise God Karen for a answer. I am believing now you all are on the right path. Now may she gain weight and grow stronger and the meds to do its thing. God bless us all.

    Susan

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  • Estepp
    Estepp Member Posts: 6,416
    edited April 2009

    Thank God!

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  • badboob67
    badboob67 Member Posts: 2,780
    edited April 2009

    Oh, Karen...Praise God!! I am so thankful that you now have an answer. How relieved you (and Olivia!) must be. I pray that you are led to an awesome cardiologist that gives you the same feeling as the wonderful people in North Carolina.

    I am so sorry about Gretel. Having my own furbabies, I know there's really not much I can say to ease your pain.

    Your family continues to be in my prayers.  I can't tell you what a joy it has been to come back to this thread after taking a bc "vacation" and reading your wonderful news. Thank you for sharing!

    ((((HUGS)))
    Diane

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2009
    Thank God for his gentle answers! And thank you, Karen, for sharing your faith and courage with us. It's GOOD! Have a terrific Easter celebration,
    Binney
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  • Linda54
    Linda54 Member Posts: 2,689
    edited April 2009

    Thank you God for answered prayers. 

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  • Journey
    Journey Member Posts: 905
    edited April 2009

    Thank you God!

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  • Marple
    Marple Member Posts: 19,143
    edited April 2009

    This journey has been incredible to read.  Thank you for sharing.  And thankfully you now have something to work with.  Kudos Karen, to you, your family and the Drs. that helped.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2009

    So happy to hear you Finally Have an Answer.

    Hoping the choice of how they will treat this works perfect right from the start & that Olivia will feel good & be able to put some weight back on.

    Pam

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