DownSyn Forum

Grady's Mommy

My 16 year old nephew Tommy will be having heart surgery on May 26th (Grady's 5th birthday). He has Marfan syndrome (as does his sister and dad). His aeorta is to the point of needing surgery now, so they've gotta do it.

I'm so scared and upset for him. Grady never needed heart surgery, but I can only think it's almost worse as a 16yo because they completely understand what's going to happen and the risks involved.

He finally opened up to my sister (his mom) the other day and talked to her and asked a lot of questions. One was "while the machine is pumping my blood for me, am I dead?". Talk about heartbreaking.

So anyway, please keep him in your prayers. I'm going to try to go to the hospital for his surgery if Mark doesn't have to work that day.

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~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Expecting #3 8/1/10

Alicia · Posted: May 06 2009, 5:30 PM Post subject:

Oh, poor kid. I bet his recovery will go really quick though. I'll definitely keep him in my prayers. Let us know how he does.

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Alicia
Mom to: Christopher - 23 years old
Dex - 21 years old
Lierin - 21 years old
Kayla - 9/6/05 (DS)
Braden- 9/11/07

Mary Beth · Posted: May 07 2009, 7:26 AM Post subject:

Praying for a successful surgery and quick and painless recovery.
Mary Beth

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Mom to Rick 30, Stephanie (27), Elizabeth (25), Robby(22), Samuel (12 DS, TOF), Shane ( 11), Katarina (7 DS, AV Canal Defect)

elizasmom · Posted: May 08 2009, 8:09 AM Post subject:

Hi Kathy,
In the hospital where Eliza is having her surgery they keep all the cardiac patients together in an ICU and discharge them from there. Currently there are 3 teenaged boys there (one with Ds whom I LOVE!) and let me tell you by day 2 all three are doing great! What seems to work for them are visitors, ipods and nintendo DS type games. Anything to break up the bordom. The boy with Ds is enjoying doing his homework! The scariest part seems to be right when they wake up and are intubated and have all this stuff stuck in them and then being extubated but after that it's amazing how quickly they feel better. They may have something through the hospital or his cardiologist (or even online) where he can talk to other teenagers who have been through it and that may help him. He's going to do great! Our thoughts and prayers are with your family!

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

momlorac · Posted: May 17 2009, 7:46 AM Post subject:

Saying a prayer for him

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Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

Grady's Mommy · Posted: June 16 2009, 3:28 PM Post subject:

My nephew's surgery got postponed till today (surgeon had family emergency).

All is well so far! The last update I got was that he was off bypass, beating on his own, and the valve looked great!!

"Thank you Lord for watching over my nephew"

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Expecting #3 8/1/10

ajbest · Posted: June 17 2009, 8:59 AM Post subject:

thankful that Tommy is doing well and praying that he recovers quickly. keep us updated, aj

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Momma to Janna Macie (CAVCanal/Mitral Valve Repair-T21-02/02/05)
Wife to Joseph (TOF & still thriving)

"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

"God has not always answered my prayers. If He had, I would have married the wrong man several times." Ruth Bell Graham

Grady's Mommy · Posted: June 18 2009, 2:11 PM Post subject:

He is doing amazing!! The surgery went well but it was LONG. He was under for 9.5 hours! He up talking sitting (in a recliner) by the evening (surgery was at 8am). He walked even more and sat up more the next day. Got cleaned up on the bathroom (no showers yet). Eating a little bit, drinking etc. Not much pain.

He's headed to a regular room today and will probably get to come home tomrrow morning!

The Dr's said to expect a MINIMUM of 2 days in the PICU and 2 on the regular floor and he's just barely going to need that much time.

He's so funny. We went up to see him last night and one of my sisters asked him 'are you in much pain Tommy" and he said "no not really...just my chest a little bit". We all busted up laughing and were like "duh".

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Expecting #3 8/1/10

Stephanie · Posted: June 18 2009, 2:24 PM Post subject:

Oh thank goodness he is doing well. Sorry I am just seeing this now but will pray for him!

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Joey 3/8/97
Megan, DS 11/8/03
Olivia 7/6/05

shea01 · Posted: June 19 2009, 9:31 AM Post subject:

Goodness, I will be praying for him!

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www.1familytogether.blogspot.com

Leanna · Posted: June 23 2009, 4:33 AM Post subject:

My thoughts and prayers are with him!

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Ann
giving spirit and seeker of joy
wife to Ken
mom to Ty Christian 4 yrs (DS)
adoption date 11/3/08 WOOHOO!
http://doinitdown.blogspot.com/