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Thanks for thinking of us !

Discussion in 'Parents Off Topic' started by allisa, Oct 24, 2009.

  1. allisa

    allisa Approved members

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    Hi all....

    Thank you for thinking of us & checking on our status....thank you Michelle for helping to spread the news. It's tough trying to update so many people.

    We are home from hospital....came home late Thursday night. He is on a bunch of meds and ordered bed rest for the week. We will go back to cardioligist at the end of the week for another echo & MRI and they will decide then if he can resume school and if/when he may need surgery.

    He was dxd with Rheumatic Fever AND Lyme disease....'cuase of course...we need the double whammy....not enough having Diabetes....let's REALLY pile it on this sweet nice kid

    The rheumatic fever has caused moderate damage to his heart valve ( on a scale of Slight-Moderate-Severe)

    The more I have read, the better I feel about his outcome. It seems that most adults with a heart murmur could probably blame it on Rheumatic Fever from their childhood....it is treatable & may not even need to be treated until later in life.

    Our cardiologist didn't present the diagnosis well. I typically take health news pretty well...we have obviously had our share in this house....on top of Ty's dibetes, my daughter has a host of health issues ( one of wich was heart defect at birth & we sailed thru surgery & doc appts. etc)....this doctor gave us the news with Ty in the room. So I was pretty careful with my questions to her. If I was alone....I would have been much more blunt and to the point and had my mind at ease...but....she tells us ( with ty right there)....."he has damage...I've never quite seen damage like this" WTF !! I said to her...."this is Childrens...don't you see EVERYTHING ??" She should have said.....THIS IS NOT LIFE THREATENING !! She never said that....just said he MUST be admitted tonite....restricted all his movements.....so I feared this is BAD !!

    So, needless to say when we go back next week, we will have a different doc...this just wasn't a good fit.....I need someone who will give me FACTS, give me best case & worst case scenarios and have enough tact to NOT tell me shocking news with my son right there. I couldn't send him out in the hall so that I could talk to her...the poor kid was crying & terrified....I didn't have the time to compose myself so that I could be calm for him.....and like I said...I couldn't ask the hard questions....and if I did....I would have gotten answers that would have eased my mind.

    Anyways....enough on my rant.....

    We are THRILLED to be home.....we will take it week by week until we know just what needs to be done. Our family & friends couldn't be sweeter....brining food....helping with siblings....they have taken such a burden from me.

    I will let you know next week what our next step is to be.
    Thanks again !
     
  2. vettechmomof2

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    So glad that you are home and very sorry to hear about the crappy bedside manner of your first doc.
    Hope he continues to feel better quickly.
    My father had Rhematic and that is what his murmur is from. No problems from that at all but RF did cause him severe hearing loss though. Something to inquire about.
    Keeping wonderful thoughts for you,
    Allene
     
  3. sisterbeth43

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    Will keep Ty and your family in my prayers. Hope you get good news soon--you certainly could use some.
     
  4. Sarah Maddie's Mom

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    Thanks for the update and best wishes for a speedy recovery and a better fit with the next Dr ;)
     
  5. lil'Man'sMom

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    Glad to hear you guys are home. Sorry to hear that the Dr. had no bedside manner.

    I will be saying prayers for Ty and your family.

    Wanda
     
  6. hmmmcormick

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    So glad to hear you are home. I hope a new dr. can help ease your fears and that the damage to Ty's heart can wait many, many years to be corrected.
     
  7. hrtmom3

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    Allisa,
    to glad to hear you are both home. Sorry about the outcome. Did they say it was narrowing of the Aortic Valve? We went through this with my daughter when she was around 5. It was brought on by Scarlet Fever.
     
  8. goochgirl

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    Thank you for taking the time to update us all. Hugs to Ty!!! Lashes to his first Cardio. for her poor bedside manner. She needs a "nice" note. Poor kid doesn't deserve this.
     
  9. Flutterby

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    I'm SOO glad to hear that you are home.. I must have missed the first post about this.. I saw Michelle's update and wondered what I had missed.. in anycase, I'm so glad he's doing better and he's at home.. We're thinking of you all.. and you know that you can count on us if you need ANYTHING!!
     
  10. Michelle (IL)

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    Please know that you, Ty and your whole family are in our prayers. I hope you get a wonderful Dr. next visit and good news as well!
     
  11. allisa

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    She didn't say narrowing....she said it was regurgitation ( sp ?)...it was "leaky"...not closing properly.....

    Now that I think about....I'm not even sure which valve or how many valves....

    I should know this....getting a new doc first thing Monday morning !
     
  12. Tigerlilly's mom

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    Allisa, I am so happy that Ty is home!!! Many wishes for a speedy recovery! I hope you have a much better appointment with a new doctor.

    Good luck with the week of bed rest:p! Hopefully that part of this ordeal with be the most difficult;)

    Glad to hear that you have such supportive family and friends, it makes such a difference:cwds:.

    You and Ty will continue to be in my thoughts.
     
  13. emm142

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    My mum has a regurgitant mitral valve, and a heart murmur. She gets yearly scans, but she has never needed any surgery and it doesn't cause her many problems. Hopefully Ty's will be like that, too.
     
  14. joy orz

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    Sorry for all this. Maybe the first doc was a resident, and hadn't seen much yet?

    We go to Children's for all of Ava's care (GI and D) and have had wonderful experiences. I've met people from all over the world who come there for cardiac care. When Ava was dx, we got to know a family from Florida who came for surgery and it went very well.

    Also, I've had a murmur since childhood, and a stricture of my celiac artery (not related to celiac gi stuff, just near the tummy so same name) Anyway, all these heart conditions look very scary on paper, but I'm doing great and Ty will too. Sounds like you've got more info and you are more at ease. Glad to hear that things are moving in the right direction.

    Also, we live about 15 minutes from Children's so if you guys are coming in for an appointment and need anything, or if you want me to fetch you some coffee, feel free to let me know.
     
  15. frizzyrazzy

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    Hugs Allisa, I'm glad you're all home and that Ty is resting. I hope the next visit brings better news for him and that you have a much better dr. :)

    Is he totally restricted to bed rest right now? Poor kid must be getting so bored.
     
  16. hdm42

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    I'm glad to hear you're home.
    Shame on the first doc for dumping it on you with him in the room and then not going on to explain and ease his (and your) fears.

    I hope that keeping him quiet for the bed rest is the hardest part of this journey for you.

    Hang in there.
     
  17. Beach bum

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    Hugs to you all. Hang in there!
     
  18. iluvmhp

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    I am glad you are home!!! Your family is in my prayers. I hope the next doctor is a better fit. I cant imagine that the last doc would be a fit for anyone. I am so sorry.
     
  19. Thoover

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    You and your family are in our prayers and here is to a speedy recovery
     
  20. Momof4gr8kids

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    I am so sorry you guys are going through this.

    My husband's best friend had rheumatic fever as a baby, which created a hole in one of his heart valves. The hole was tiny, so not much was done about it, but they watched it closely. When he was 18 the hole had grown so much they decided they needed to do a transplant. It's been 15 years since then, and he is doing great. He is a normal 30 something man, who is not restricted, and hasn't had any further problems with his heart.

    I hope that after medical treatment, that Tom has a similar experience. ((hugs)) to you all.
     

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