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CYANOSIS QUESTION...(ZOE)
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Zoes Nana
Posted 2008-05-02 8:57 AM (#33050)
Subject: CYANOSIS QUESTION...(ZOE)



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HAS ANYONE EVER HAD A PROBLEM OR NOTICED ANY
DISCOLORING IN THEIR CHILDRENS FEET OR LEGS?

ZOE HAS BEEN FOR THE PAST FEW WEEKS, HAVING SOME, WHAT I THINK IS CYANOSIS...
WE STARTED TO NOTICE IT WITH THE RASH AND THE SOCKS, AND NOW THE BLUISH-RED
FROM THE FEET UP...
JUST AT TIMES, MAYBE MORE WHEN SHE IS COLD...IT COME AND GOES, AND IS BRIEF...
ZOE HAS HAD PROBLEMS WITH HAVING A VERY LOW BODY TEMP, EVEN HAS A CT SCAN TO CHECK THE
STRUCTURES, BUT THEY FOUND NOTHING...
SHE IS AT TIMES IS AS COLD AS A FISH, (LEGS AND FEET)...SOMETHING I WOULD THINK SHOULD BE EXTREMELY
PAINFUL, BUT IS NOT FOR HER...
ARLENE AND I ARE PULLING OUR THOUGHTS TOGETHER, THINKING MAYBE WE SHOULD HAVE HER SEEN BY HER TEAM, ESP HEART AND LUNGS, AND
I AM GOING TO PUT A NOTE OUT TO DR. EMANS TODAY FOR HIS THOUGHTS...
HAS ANYONE HAD ANY PROBLEMS LIKE THIS???
THANKS,
ARLENE AND JOBEY
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Maggie's Mom
Posted 2008-05-02 10:03 AM (#33051 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Hi Jobey-
Maggie's hands get a rash when it is cold and but not her feet. Keep me posted as I am interested in the conclusion.
Susanne
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Zoes Nana
Posted 2008-05-02 11:46 AM (#33055 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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JUST HAD A CALL FROM THE NURSE AT ZOES SCHOOL..
THEY TOO HAVE NOTICED, AND ARE CONCERNED ABOUT ZOES LEGS...
WHAT THEY HAVE BEEN SEEING IS THE "REDNESS"...THE OBSERVANCE OF THE NURSE
IS THAT IT ENDS WHERE THE SOCKS CUT END...
ONE OF THE THINGS ALSO WITH ZOE IS THAT SHE STANDS ALL DAY...SHE HAS HER SEAT, AND OF COURSE CAN SET, BUT
ITS BEEN MORE COMFORTABLE TO STAND, SO THAT IS A LONG DAY ON HER FEET, BUT THIS IS SOMETHING SHE HAS DONE, AND NOTHING NEW SINCE THE DAY SHE FIRST STARTED SCHOOL...
BUT SHE IS HEAVIER NOW THAN EVER BEFORE...
SO MUCH GOING THRU OUR MINDS RIGHT NOW...HER WEIGHT IS ALL ON THE TOP, AND MAYBE ALOT FOR HER LITTLE LEGS...??
I DID PUT A NOTE OUT TO DRS. EMANS, AND NURKO...THEN WE WILL GO FROM THERE...

PROBLEM IS THOUGH, MY HUSBAND HAS BLEEDING IN BOTH OF HIS EYES BECAUSE OF THE DIABITIS, AND IS DUE LASER ON MAY 12 AND 19TH, SO THIS MIGHT BLUR HIS VISION FOR A WHILE, SO IF WE HAVE TO HEAD TO BOSTON, I GUESS THIS WILL BE MY "MAIDEN VOYAGE"...DON'T GET ME WRONG, I AM A VERY GOOD DRIVER, BUT MY PRECIOUS HUSBAND HAS TRULY BEEN "THE MAN"...LOL...STILL IS GOD LOVE HIM, BUT A LITTLE FRAGILE THESE DAYS...
THANKS...
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Wendy
Posted 2008-05-02 1:00 PM (#33057 - in reply to #33055)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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This sounds very perplexing! Hmmm? I hope you can find answers!

Alex's heart condition can cause cyanotic episodes... For a heart patient, they tell you to watch for episodes--typically blueness in the lips/face and fingernails -- and cyanosis often is accompanied by shortness in breath or difficulty breathing and/or fainting... Thankfully we've never been through such an episode w/Alex, but we do see his lips go purple when ever he swims. He also gets extremely cold in water -- more so than usual -- and we've been told this is due to his heart inefficiency...

Not sure cyanosis is what's going on for Zoe -- hope not! Keep us posted!
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shannon p.
Posted 2008-05-02 1:15 PM (#33058 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Jobey,

They're all certainly keeping you on your toes and how lucky is your family to have you! Wish I was there to lend you a hand-- I'm with you in spirit!! Hope the Neuro or Dr. Emans can offer some insight. Please keep us posted. Very interesting. Caroline does have circulation issues but always has--even before she became scoliotic. It all has to due with her arthrogryposis. I wish you all the very best. You be sure and take care of yourself, too!

Shannon
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stees
Posted 2008-05-02 4:42 PM (#33060 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)


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Hi Jobey,
As for the driving, you will be fine. It is interesting how challenges continue to come thick and fast, but obviously God knows you can handle it.
Cyanosis... we haven't had a big problem with this but William DOES have the strange characteristic of going red on one side of his face only when his bath is a little too warm. His feet get cold, but he also gets sweaty at night. I don't worry about it much (too much else to worry about probably!)
Weight gain... as I've mentioned to you before, we had Malcolm's weight balloon after he started to get healthier. He went from wraith to wrestler in 8 months. We then were in denial for a bit, until Dr. Reilly mentioned the size of Malcolm's tummy with reference to breathing issues and recovery. After that, I snapped out of denial and restricted Malcolm's snacks as much as possible. We got him to a healthier weight, but he's still on the soft side for a boy.

He's in loads of sports and walks to and from school now. Without that exercise, he could nót have the burger and fries treat once a week that he craves. It's something I'm going to have to watch as he gets older and needs to study more. The last thing I want is for him to have weight-related health matters as well as ortho matters.

With Zoey, I know you were trying to look at her calories. I don't know how much she can exercise. It would help her overall health if she kept her heart as healthy as possible, but as I say, I don't know her limitations very well.
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Zoes Nana
Posted 2008-05-02 5:09 PM (#33061 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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SUSAN,
ZOE ALSO GETS THE "ONE SIDED" RED FACE...
LIKE WILLIAM, WHEN THE BATH IS WARM, OR THE TEMP...NEVER IN THE TWO SIDE THOUGH??
ANOTHER MYSTERY I QUESS..
WE DO HAVE TO BE CONCERNED ABOUT HER WEIGHT...SHE IS NOT MUCH FOR EATING, BUT STILL WITH THE PEDISURE...
WE HAVE TRIED TO CUT HER DOWN, AND WANT VERY SOON TO TRULY LIMIT HER, BUT HAVE BEEN HESITANT TO DO IT, BECAUSE OF THE PROBLEMS WITH THE "CYCLIC VOMITING", AND NOT WANTING TO "ROCK HER WORLD"...
HAVING BEEN ON THIS PEDISURE FOR WHAT IS MOST OF HER LIFE, IT IS A TRUE "ADDICTION" FOR HER...
LOTS OF KINKS TO WORK OUT FOR THESE KIDDO'S BEFORE "GRADUATION"...

GOD BLESS...
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Carmell
Posted 2008-05-02 6:30 PM (#33062 - in reply to #33061)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Jobey,

Sending BIG HUGS to you as you continue to be the ROCK for your family.  We'll be thinking of Bill as he has eye surgery this month.  Good luck with that.  Hope all goes well.

Zoe - not sure what to tell you.  She continues to be quite a puzzle.  There is another VACTERL boy (Sean) who has the one-side redness/non-sweating, etc. issue.  There is a medical name for it, his mom knows (I don't have time to look it up right now).  He doesn't sweat on one side of his body (or maybe just face, but I think its his entire body).  It's called hemihyper- something... something like that.  This doesn't change anything for Zoe, she still needs to be checked out to make sure its nothing serious.  Very odd.  Good luck with her eating issues too.  A huge balancing act.   

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Maggie's Mom
Posted 2008-05-02 7:33 PM (#33063 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Maggie gets that red and nonsweating on one side of her head- we were told it was because of her horner's syndrome- huh!
Susanne
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Diane17
Posted 2008-05-02 8:49 PM (#33064 - in reply to #33050)
Subject: RE: CYANOSIS QUESTION...(ZOE)



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Definately something to be concerned about. Praying all goes well with your trip for Bill.
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Carmell
Posted 2008-05-02 11:19 PM (#33068 - in reply to #33063)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Interesting about the Horner's Syndrome... Braydon has never had a problem with redness on one side of his head/face. 
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Rhonda
Posted 2008-05-03 1:31 PM (#33073 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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YES YES YES,,,, Madi has this on her feet, legs and arms...and she has the one-sided face syndrome. I am getting a bit freaked here, gang... the cross overs cannot be coincidental!
Next...how many of your kids have BUZZING in feet if they sit too long?
And, it creeps to Madi's legs, also if she sits too long. She does much of her work at school standing due to this phenom.
(?)
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ehead
Posted 2008-05-03 3:45 PM (#33074 - in reply to #33050)
Subject: RE: CYANOSIS QUESTION...(ZOE)


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Elizabeth does not have the discoloration that you speak of , but sometimes her hands and feet, particularly her feet, are like ice cubes. Now she is not a fan of socks or slippers and runs around the house with barefeet, warm or cold weather. But after reading about Zoe, this is something I will keep a closer eye on. As far as Zoe's weight and pediasure, have you considered doing half pediasure half skim milk? I did this with Elizabeth after she began gaining weight after her implant surgery. She now a good height/weight ratio.
Elizabeth
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Carmell
Posted 2008-05-03 4:46 PM (#33075 - in reply to #33073)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Rhonda,

Has Madi had a tethered spinal cord (TC)?  Have you talked to a neurosurgeon about her tingling sensations?  If she's had a TC release, it could be that the nerves are as "healed" as they are going to get, and this sensation is "normal" for her.  However, if this is new to Madi, and it comes and goes, then I'd be asking a neurosurgeon about possibilities.  When Braydon had his second TC problem (at age 11yrs old) one of the problem symptoms for him was leg/feet tingling and numbness/weakness.  Every child is different.  Just a thought based on our experience.

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Kimm0330
Posted 2008-05-03 5:50 PM (#33076 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Wow this is very interesting! Sarah has had a TC, but was released in 2005. She still gets "tingling" as she calls it in her feet and legs. She also gets this "lacy" rash from her arms and legs. Never any rashy stuff on her belly. Her cheeks get bright red and the doctors always blame it on the temperature changes i.e. baths, showers, swimming and outside/inside temps. Sarah also does alot of her schooling standing because she is more comfy that way. We do have a pillow on the back/seat of her chair. There are lots of coincendenses isnt there?? Please let me know how things work out for everyone. Take care and God Bless.
Kim
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rscash
Posted 2008-05-05 12:09 AM (#33085 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Shawn's feet do get VERY cold, and before his first surgery when he did a lot of running around he would turn blue around his lips. Something that I haven't noticed in the last few months. We still have the cold feet problem, so I guess I should mention that to his doc on Tuesday.

I hope that you can get some answers about all of Zoe's issues soon. I know how frustrating it is to not have answers or names for the issues that the kiddos are dealing with. We still don't have a name for Shawn's condition, nor can they tell me why. Not that I can do anything about it, but I guess I would just feel better having a name or reason for everything. Also with the food issue, both Shawn and his sister Leilani have gastric reflux. We spent alot of time in Boston @ Children's when Leilani was a baby for testing and check-ups. My hubby is from Cape Cod and we lived there for the first 3 years of our marriage. Anyway I know what it's like to not want to rock the boat. If they were keeping it down I didn't and don't want to change it.

I hope you get some answers soon, and everything goes well with Bill's surgery. You all are in our prayers!!!!

~Rebekah~
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Zoes Nana
Posted 2008-05-07 9:07 AM (#33149 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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DEAR FRIENDS,
WE HAD ZOE TO HER PED. YESTERDAY...
THE PROBLEMS SHE IS HAVING IS "VASCULAR"..
SWELLING IN HER FEET, AND BLOOD POOLING??
BEST CASE IS THAT THIS IS A REATION FROM THE "AMITRIPTYLINE" SHE IS TAKING THE THE "CVS",
WORST CASE IS A MAJOR ARTERY IN HER STOMACH...
FOR NOW WE ARE GOING TO BE TRYING SOME "RE-POSITIONING" BECAUSE THAT DOES SEEN TO HELP...
THEN THEY ARE TALKING ABOUT "DOPPLER STUDIES & CT SCANS, ECT"...
WE ARE NOT SURE WE WILL NOT BE DOING THOSE, SOONER, RATHER THAN LATTER, BECAUSE WE ARE WAITING ON BOSTONS THOUGHTS...
WE ARE TRYING TO STAY CALM, AND PRAYING FOR THE LESSER OF THESE EVILS...
OTHER THAN THIS, ZOE IS JUST DOING SO GREAT...
THANKS SO MUCH FOR THE PRAYERS...

GOD BLESS...
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Wendy
Posted 2008-05-07 4:22 PM (#33162 - in reply to #33149)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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hugs... Hoping it turns out to be a smalley and not a biggie issue to resolve.
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Cari
Posted 2008-05-07 4:49 PM (#33164 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Jobey, it never seems to let up for you all... big hugs your way and praying that this is the lesser of two issues...
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Zoes Nana
Posted 2013-03-04 6:38 AM (#41659 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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THIS PROBLEM CONTINUES WITH NO ANSWERS TO PLAQUE ZOE...STILL LOOKING FOR AN ANSWER...HEADE TO CHOP NEXT WEEK...I HAVE LETTER OUT ALL OVER THE COUNTRY...ZOES TOES ARE STARTING TO TURN BLACK AT TIMES NOW AS WELL...SWELL AND PAIN....>???
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kchristensen
Posted 2013-03-18 2:12 AM (#41666 - in reply to #41659)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Is diabetes a possibility? I'm just throwing it out there. My uncle lost part of his leg because of his diabetes, but I would think they would have checked for that already.
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Emily's Mom
Posted 2013-03-19 2:22 PM (#41667 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)


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Did you find out anything at CHOP?
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Emily's Mom
Posted 2013-03-19 2:22 PM (#41668 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)


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Did you find out anything at CHOP?
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Zoes Nana
Posted 2013-03-20 7:17 AM (#41669 - in reply to #33050)
Subject: Re: CYANOSIS QUESTION...(ZOE)



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Johanna Prochaska Lambert
March 16
BACK IN TOWN, TRIP WENT WELL, AND ZOE MET WITH SOME OF THE KEY PLAYERS IN HER HEALTH CARE...ZOE'S SINGLE KIDNEY ULTRASOUND READS 'WELL'...'VASCULAR', THOUGH SHE DOES HAVE GREAT ANOMOLIES, THEY ARE NO 'BLOCKAGES'...SHE WILL BE WORKING ON EXCERCISES TO HELP HER CIRCULATION, AND WE ARE GOING TO SET HER UP WITH MESSAGES AS WELL...'PULMONARY'...AS MUCH AS I LIKE THIS DOCTOR, HE OUT RIGHT TOLD US HE IS A 'PESSIMIST'....SO WE ARE ABSOLUTE OPPOSITES OF ONE ANOTHER...ZOE LUNG FUNCTION, AND HER HER NUMBERS ARE VERY LOW...SAYING THAT THOUGH SHE DOES WELL WITH WHAT SHE DOES HAVE, AND THAT IS VERY IMPORTANT....HE WOULD LIKE HER TO HAVE A SLEEP STUDY THOUGH...JUST TO SEE WHAT AND HOW SHE IS DOING DURING SLEEP, AND CAN SHE BENEFIT FROM SOME HELP AT NIGHT...ZOE STAYED SILENT DURING OUR VISIT, BUT WHEN WE GOT TO THE ELEVATOR SHE ADVISED US, SHE 'WILL NOT' AGREE TO THE SLEEP STUDY...LONG STORY...BILL HAD IT, FAILED IT, SENT HIM INTO 'A-FIB', AND NOW WE HAVE ALOT OF ENCOURAGING TO DO TO BRING HER 'ON BOARD' WITH THIS...NEXT TRIP WILL BE BOSTON TO MEET WITH THE OTHER PART OF HER TEAM THERE...THAT WILL PROBABLY BE NEXT MONTH....BOTTOM LINE SHE IS 'STABLE' ...HARD THING IS THOUGH WITH THESE TRIPS, IT IS 'IN YOUR FACE'...REMINDERS LIFE IS FAR FROM 'NORMAL' FOR ZOE...AND THAT NO MATTER HOW MANY TIMES I DO IT, IS A HARD PILL TO SWALLOW....
THANK YOU AGAIN TO EVERYONE THAT SENT US AWAY WILL PRAYERS AND GOOD WISHES...IT TRULY MEAN SO MUCH TO US...GOD BLESS
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