Going to the Cardiologist

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Date Joined Jun 2008
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   Posted 2/11/2009 12:54 AM (GMT -7)   
In the morning I am heading to Spokane with my daughter, Misty & my 10 yr old grandson, Deylan.  He was born with a very bad heart due to the Holt-Oram Syndrome-a genetic disorder-that we have.  It was a tramatic first 5 years of his life which we lived through in a total fog.  We would go from sheer elation that a surgery may have worked to finding out he only had a month left.  Up & down!!!  His Dr in Spokane then sent Deylan to New York City to a team of Doctors that had a new proceedure.  They had never done the proceedure on anyone so young.  But, we went & it worked, partially, so we had to go again.  Twowomen from a small town in Montana.  Wow, what a city.  Anyway, after 2 more surgeries, he has been doing really well.  When he was 6-1/2 months old he came out of his first surgery with no visible heart beat so he has a pacemaker.  He has grown so much that it may be the pacemaker leads are now too short, I hope it is something like that. Or that his pacemaker needs tweeked.  He has been getting more & more tired & has been having chest pains.  So, I hope this is not something major.  I will let you know when I get back. 
When Deylan was so sick after he was born, Misty couldn't get a doctor to believe her that something was wrong with Deylan.  She took him to 5 or 6 different doctors who just pooh-poohed her & said she was overreacting, even though we have this disorder in our family.  I have learned to be very cautious about putting my faith in a doctor.  They have to prove they are good.  Well, i could say alot more but that isn't what I had planned to do. I just wanted to say that this is where both Misty & I got out Fibro from.  After 5 years of dealing with this Misty had Fibro, several AI diseases & the back of her hair was totally grey, she is 33 now.  My husband had turned completely grey & I had Fibro & had gone totally through menapause on a plane trip to NYC.  Really!!!
Anyway, how writing this brings back memories.  I hope & pray that he will be alright.  I will let you know how it goes.  Love & hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

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Date Joined Jan 2009
Total Posts : 1014
   Posted 2/11/2009 6:30 AM (GMT -7)   

((( Denise, Misty & Deylan ))) ... You're in my thoughts and prayers.  I hope everything goes well and they just have to do a little tweeking with his pacemaker.  

It sounds like your family has really gone through the wringer with all of this.  There's nothing worse than a mother knowing that something's wrong with their child and the medical community pays little to no attention to their plight.

I'll be thinking about all of you and please keep in touch and let us know how things are going.

Warm gentle hugs,

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel. 
Meds = Elavil, Tramadol, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

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Date Joined Aug 2008
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   Posted 2/11/2009 6:39 AM (GMT -7)   
Sending hugs and prayers your way, Denise.  I hope everything goes well.
"There is no charm equal to tenderness of  heart." - Jane Austen
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.

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Date Joined Nov 2008
Total Posts : 2858
   Posted 2/11/2009 7:04 AM (GMT -7)   

Hugs and positive thoughts for you today.  Be sure to let us know how things go.



fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 2/11/2009 7:22 AM (GMT -7)   
Denise I can't imagine what the past 10 yrs has been like for you and your family. I pray all they have to do is change the leads or tweek the pacemaker.
luv and hugs
Forum Moderator Fibromyalgia
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MT Lady
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Date Joined Jul 2008
Total Posts : 969
   Posted 2/11/2009 7:38 AM (GMT -7)   
((( Denise, Misty & Deylan ))) Warm, loving thoughts and many prayers being sent your way,
warm wishes,

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17501
   Posted 2/11/2009 12:48 PM (GMT -7)   
Denise, this has to be so stressful for you and your family.  You are in my thoughts and prayers.  Let us know how Deylan is.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined Dec 2008
Total Posts : 478
   Posted 2/11/2009 1:33 PM (GMT -7)   

Best of luck with your grandson, Deylon. What a journey you have had. I will be praying for you toooooo.


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Date Joined Jun 2008
Total Posts : 726
   Posted 2/12/2009 12:17 PM (GMT -7)   

Thank you all for you prayers & loving kindness to me & my family.  Deylan is ok, YEA!!!!!  He is experiencing "heart wall pain" but it is not a heart attack.  Dr. Anderson said the Echo & EKG showed his heart is stable & doing ok.  The tech from the pacemaker company who checked out Deylans pacemaker said it is showing "all is well". (big sigh of relief)  His own heart is beating 20% of the time & the pacemaker 80%.  Dr. Anderson said some of the pain could be the shock of going from heart to pacemaker.  Warm heat & Ibuprofen as needed.  If the pain doesn't subside it may mean he has been doing too much & will need to rest for 4 - 6 weeks so it can heal.  But doing very well.  His Dr doesn't have to see him for a year. 

Deylan got his important questions asked of his Doctor.  Can I play on the Wii?  It does have a caution for people with pacemakers.  Dr. Anderson said he could, just keep the control 6 inches away from the pacemaker.  Deylan wants the pacemaker moved to its final position by his shoulder, it is in his stomach right now because of room.  Dr Anderson said he would look at that in a year but for now Deylan is happy, he can play on the Wii.

Misty & I pretty much crashed after the dx.  Pain & fatigue but after living in the stress of the 4 hour drive & waiting for the dx, that is to be expected, I guess.  We made it all the way home in one piece, I know I went almost immediately to bed & I am sure Misty did the same.  She drove the whole time.     

I am so happy for Misty, she does not need anymore to bear at this time.  I will share your posts & prayers with both Misty & Deylan.  Once again, thank you so much.   Many, hugs, Denise   

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 2/12/2009 12:33 PM (GMT -7)   
Oh, Denise. Somehow I missed this thread. I'm sorry I didn't pop in sooner and let you know I'm thinking of you and your family. I am so happy to hear that the news is good for Deylan. That's great that he gets to play his Wii! I can't imagine a little boy that age going through so much, it is good that he gets to be involved in a quote unquote "normal" activity for a boy his age. I hope he has tons of fun with it!!

So much you all have been through! I just can not imagine the stress and pain of it all. This all must be so hard on you and your daughter-my prayers go out to both of you and to Deylan as well. I pray that you and Misty have all the strength, love, and support you need and that Deylan's heart continues to grow stronger and stronger.

{{{{{{hugs}}}}}}} to all of you. Please keep us posted on how he is doing as you can.
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

Regular Member

Date Joined Dec 2008
Total Posts : 478
   Posted 2/12/2009 1:21 PM (GMT -7)   
Denise, that is the best news for Deylan and all of you. So happy you shared it with us. Yes, Wii is such a lot of fun and I know he must love it. They have tennis and I LOVE that.

Have a great eve, Patsie

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 2/13/2009 10:09 PM (GMT -7)   
Oh boy Denise,

I am so glad your grandson is well. NYC is something else isn't it. I grew up there. YOu have to go back for a fun visit with your grandson.

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