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surgery is coming
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whislermom
Posted 2011-05-26 10:30 AM (#41115)
Subject: surgery is coming


Member

Posts: 23

My son, Myles is scheduled for his first veptr implant on June 7. He is 18 months old and I am getting more and more nervous. Just a few questions for all of you experts. How long does the surgery usually take? I know I've heard that the "getting the lines in" takes the most time. Did your kids come out to the PICU still on the vent and for how long? Myles has had several small surgeries and has always done well with anesthesia but I was wondering if they keep them pretty sedated and vented for a while after surgery. Are the rooms at CHOP private. I am probably mostly concerned about the infection potential and pain issues. How soon do they want the little ones up and moving? Myles loves to run around and I am hopeful that he will want to get up and moving again quickly.
Sorry about the randomness of my questions. My mind is just a whirlwind right now and the more info I can get, the better I will feel. I just can't wait to get it over with. I would love to put him into a bubble to keep him well until the surgery but I know that is not possible. Thanks for all the info and advice!

Brenda

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kchristensen
Posted 2011-05-28 9:41 PM (#41122 - in reply to #41115)
Subject: RE: surgery is coming



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Posts: 167
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Location: Phoenix, AZ
Hi Brenda,
I love your son's name! I remember throwing a bunch of random questions on this site (multiple times) before Carter's first surgery. (He was 18 months old also.) I think everyone here knows how nerve racking the whole experience is... especially the few weeks leading up to surgery.
I know you know that everyone is different, but it took about two hours to place Carter's lines and get the anesthesia and the spinal cord monitoring in place. I was shocked that two hours later the nurse was coming in to the waiting room saying they were finishing up placing all the lines. His entire surgery was less than five hours. I want to say more like four from the time he went back to the time they came and got us.
Carter was not on the vent after the surgery and they took out his breathing tube. He was having some trouble breathing that night and they had to insert a tube down his nose to help him breathe. That was tough, but he was very well medicated that first night. We were alone in our PICU room but I can't remember if there was a bed next to his or not. He stayed in the PICU for two nights because they had not taken out his arterial line?.... the one that I think was in his neck.

I think the day after the surgery they wanted him to try and turn from side to side and they started sitting him up a bit. I think it was day three, but it may have been day four, that they started talking about walking, but Carter would have none of it. He wouldn't put any weight on his legs. I do know that laying from side to side was first, then sitting up, then standing and walking. We took him to the playroom on day five and he walked for the first time. I felt so bad because he kept walking even though he was crying from the pain, but he wouldn't let us lift him up.
I know that they want them up walking as soon as possible so that things like pnemonia or breathing problems don't start from being seditary. Also, I think they become more stiff if they stay in bed longer.
Carter loved the IPod in the hospital, and they had a DVD that we could use.
You'll be so thankful when this first VEPTR surgery is behind you. We were. Even though they'll have to replace the rods again and have more expansions, the first is the most traumatic by far. We had to have ribs separated and we weren't sure that they could place two rods, so to have all that over with was great.
Good luck with everything!

Edited by kchristensen 2011-05-28 9:42 PM
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whislermom
Posted 2011-05-28 9:59 PM (#41123 - in reply to #41122)
Subject: Re: surgery is coming


Member

Posts: 23

Thanks Kristy for all the info! They are going to cut some of Myles' ribs apart too. They're not sure if they'll be able to put both rods in this time. I sure hope they will be able to place both. I absolutely dread seeing him in so much pain. How long did it take Carter to be back to his normal self?
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Zoes Nana
Posted 2011-05-29 12:38 PM (#41124 - in reply to #41115)
Subject: Re: surgery is coming



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LOTS OF THOUGHTS AND PRAYERS COMING YOUR WAY...GOD BLESS...
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stees
Posted 2011-05-30 6:24 PM (#41127 - in reply to #41115)
Subject: RE: surgery is coming


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Posts: 1127
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Location: Vancouver, Canada
Hello Brenda,
Although I can't speak for CHOP's techniques, I know that movement is gently encouraged as much as the child will tolerate at our hospital. It is good for their lungs to get moving to clear any flotsam out.


As for immediate mobility, I remember that William was so furious after his initial implant that he got up in his crib and put his arms around me. He might have had a little local left in in surgical sites. ; )

There is pain, fear and imbalance after surgery. Every child is different. It seems like a long time, but I would allow three or four weeks of recovery before Myles is back to his usual cheerful, busy self. Later surgeries will not take nearly as as long to recover from.

Have faith! You're in good company here.


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kchristensen
Posted 2011-06-01 11:48 PM (#41142 - in reply to #41123)
Subject: Re: surgery is coming



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Posts: 167
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Location: Phoenix, AZ
I would say that Carter was his "normal" self about the third week from surgery, but really that first week and half was the toughest. The pain gets a little more managable each day. We followed Carter around and watched him very closely to make sure he didn't fall too often because of the imbalance. He pretty much had a normal walk after his second day of walking again. The thing that really bothered Carter were the bandages. He kept saying, no sticky, no sticky.
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stees
Posted 2013-04-08 7:42 AM (#41699 - in reply to #41115)
Subject: Re: surgery is coming


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Posts: 1127
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Location: Vancouver, Canada
Hi Kristy,
Welcome to the growing world of parents whose kids have VEPTR. I have three sons who have gone through this surgery and still go through the lengthnings and revisions. BTW, Dr. Chris Reilly in Vancouver, Canada is an excellent surgeon.

The first surgery is by far the hardest, but with Myles' age he will soon forget it. I don't know if he has other conditions, or if like my boys he merely has the spinal uniqueness, but the first surgery takes a few days in hospital to recover from enough to go home. Five days, I would estimate, up to seven. The hard parts are the pain, getting confidence back enough to try walking (soon is good), and then getting off of all the pain meds. The pain meds cause their own host of problems, such as constipation, difficulty urinating, and bad moods. Monitor him and the staff. Don't be afraid to ask questions, or remind someone to wash hands before touching your child. This will be a difficult time for your family but it will pass.

Build/ maintain the relationship with your doctor. He/She will be the champion for your son in the hospital and through later surgeries.

Keep yourself strong through whatever means help you; there will be setbacks over the years (unless you are very lucky) but they will be overcome. Use this group, or enroll in the Yahoo group that someone set up, or enlist your community to support you through companionship or prayer.




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stees
Posted 2013-04-08 7:42 AM (#41700 - in reply to #41115)
Subject: Re: surgery is coming


Elite Veteran

Posts: 1127
100010025
Location: Vancouver, Canada
Hi Kristy,
Welcome to the growing world of parents whose kids have VEPTR. I have three sons who have gone through this surgery and still go through the lengthnings and revisions. BTW, Dr. Chris Reilly in Vancouver, Canada is an excellent surgeon.

The first surgery is by far the hardest, but with Myles' age he will soon forget it. I don't know if he has other conditions, or if like my boys he merely has the spinal uniqueness, but the first surgery takes a few days in hospital to recover from enough to go home. Five days, I would estimate, up to seven. The hard parts are the pain, getting confidence back enough to try walking (soon is good), and then getting off of all the pain meds. The pain meds cause their own host of problems, such as constipation, difficulty urinating, and bad moods. Monitor him and the staff. Don't be afraid to ask questions, or remind someone to wash hands before touching your child. This will be a difficult time for your family but it will pass.

Build/ maintain the relationship with your doctor. He/She will be the champion for your son in the hospital and through later surgeries.

Keep yourself strong through whatever means help you; there will be setbacks over the years (unless you are very lucky) but they will be overcome. Use this group, or enroll in the Yahoo group that someone set up, or enlist your community to support you through companionship or prayer.




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Zoes Nana
Posted 2013-04-10 5:23 PM (#41703 - in reply to #41115)
Subject: Re: surgery is coming



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HI SUSAN, SO GREAT SEE YOU HERE...JUST WANTED TO LET YOU KNOW, THERE IS A FAMILY IN THE 'CANADA' SECTION LOOKING FOR HELP, AND THOUGHT YOU MIGHT BE JUST THE ONE TO TALK WITH THEM...MISS EVERYONE HERE...FACEBOOK IS NICE, GREAT WAY OF SHARING, BUT JUST MUCH TO FAST...TOO MANY GET PASSED OVER WHEN THEY NEED QUESTIONS ANSWERED...URGH...

ALSO WANT TO SHARE OUR FOUNDATION WITH YOU....ARLENE JUST UNVIELED THE MASCOT TODAY...DRAWN BY ZOE...SHE WANTS TO BE A GRAPHIC ARTIST, AND WHERE BETTER TO START THAN HELPING HER MOM, HELP OTHERS....GOD BLESS...REMEMBER EMAIL IF YOU EVERY WANT TO TALK....I TRULY MISS THE OLD DAYS...

http://r2bfoundation.org/
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stees
Posted 2013-04-10 10:16 PM (#41704 - in reply to #41703)
Subject: r2bfoundation


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Posts: 1127
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Location: Vancouver, Canada
What a great website and Mascot! I have subscribed and will spread the word. So good to see you online again.
Things go fast and our kids need so much of our time. Malcolm (12), made it in badminton finals at school. Unfortunately he has surgery on Friday and will not be able to play in the actual final unless, after three days, he is feeling "better" enough.

I will go find the Canadian family round here....
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Zoes Nana
Posted 2013-04-11 5:38 AM (#41706 - in reply to #41704)
Subject: Re: surgery is coming



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Posts: 3970
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Location: Plymouth, Pennsylvania
THANKS SUSAN....
GALD TO HEAR THE BOYS ARE DOING WELL...ZOE IS NOW 15...SHE HASD HER LAST EXPANSION 17 MONTHS AGO, AND AT THAT TIME SHE HAD ALREADY STOPPED GROWING, AND THEY BARELY MOVED THE RODS, SO THERE IS JUST NO MORE ROOM, NO MORE EXPANSIONS...DR. EMANS THOUGHT IS TO JUST LEAVE THE RODS IN, AND WATCH AND SEE HOW THINGS GO FOR HER...HE DOES NOT SUGGEST A FUSION AT THIS TIME....AND EVEN IF THE RODS WOULD START TO GIVE HER TROUBLE...'MIGRATE, WHATEVER' HE WOULD ATTEMPT TO JUST TAKE THEM OUT, AND AGAIN NOT FUSE HER BUT WAIT TO SEE, AND MONITOR HER SPINE...SO AFTER ALL THESE YEARS, THIS IS TRULY LIKE WINNING THE LOTTERY...
HER LUNG FUNCTION NUMBERS ARE NOT GOOD...BUT SHE HAS NO PROBLEMS WITH THAT EYE THAT WE CAN SEE WITH BREATHING, UNLESS SHE IS RUNNING UP THE STAIRS...BUT ZOE A 'MELLO' KIDDO, SO IT THINK HER BODY KNOWS WHAT IT CAN AND CANNOT DO...?...OTHER THAN THAT EVERYTHING IS VERY WELL...SHE DOES ENJOY, AND DO WELL IN SCHOOL...LOVES HER ART, AND JUST HAPPY WITH LIFE...
ARLENE'S IS ENGAGED NOW TO A WONDERFUL FELLA, AND WORKS HARD ON THE FOUNDATION, MY HUSBAND, THOUGH HIS HEALTH AND EYESIGHT ARE POOR, HE IS STABLE...
ODD HOW AFTER ALL THESE YEARS OF SURGERIES AND HOSPITALS, OUR LIFES HAVE TRULY SLOWED DOWN...FEELS WONDERFUL, BUT I HAVE TO LOSE THE ANQUISH FEELING, OR ALWAYS WAITING FOR THE 'OTHER SHOE TO FALL' AS WE SAY HERE...LOL..
REALLY SO GALD TO HEAR FROM YOU...
STAY WELL, AND HUGS TO YOUR '3 GUYS'...GOD BLESS...
JOBEY
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