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New User
Posts: 4
| Hello everyone. My name is Pat and I am a nurse to a very special little girl who is this minute in the OR having her VEPTR surgery! I have spent the last 3 years as her home care nurse and I am very curious about post op care. Could someone please enlighten me as to what to expect? I value your experience and knowledge and hope to benefit from your triumphs and trials. God is with you all and I pray for your children and for my little patient. God bless you.
Pat |
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Extreme Veteran
Posts: 557
 
Location: casper wyoming | Hi Pat just want to welcome you to the vepter forums. My son has two bilateral vepter implants that go from his top rib to his pelvic one on each side.He wasnt able to have the rib implant because of hemmi vertabras.So I think recovery for him wasnt as saverie as most.I know that each child has different needs for the vepter so I think recaovery might be differt for some.After James had his surg we had to pick him up under the behind (not under his arms )kinda like a swoop. He was realy stiff in the back he bends at the knees and not whith his back. that was kinda hard for me to get used to.Well Iam rambleing But Iam sure there will be others that can answer your ?.this is a great place to come for support and friendships. |
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Extreme Veteran
Posts: 599
Location: Southern California | Pat -- What a wonderful person you must be to care for this little one! Post-op care... What to expect... Well immediately, post-op -- there is intubation in ICU... For some, the child is intubated for several days, for us it was about 24 hours after surgery. Some kids stay in ICU for several days (5-7) - others get moved down to regular post-op care floors within 2-3... My son had extensive rib cutting -- and was in excrutiating pain -- so pain management became the biggest issue--and then subsequently, constipation management. When there is that much trauma it's really horrible to have constipation! There were several chest tubes... My son even had a blood transfusion in the ICU as his counts were low... We were in the hospital for about 9 days before heading home. Alex never walked in that time - he just wasn't ready. But, again, that's different w/each child... He started about one day later when he got home. His balance was off - having been straigtened from a 90 degree curve to about 30 and growing 2.5 inches -- and was wobbly for a while... Once we were home, pain management again, was the biggest issue and constipation. Sorry, these are just generalizations -- if you have any specific questions, perhaps I can be more helpful! Its been a while since Alex's implants -- more than 5 years ago, now! -- so I'm a bit rusty on the details! Best wishes to you and your little gal. |
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Expert
Posts: 3243
  
Location: Utah | Welcome Pat. I hope you find this a place to share experiences and support. If you haven't already, you will find there are children with very different medical backgrounds here. No two VEPTR kids are alike. Braydon's implant experience was similar to Wendy's Alex. He was in the hospital for 8 days (6 in PICU). He was intubated for 48 hours. He, too, needed a transfusion in PICU 48 hours after surgery. After that, his recovery seemed to get a jump start. Constipation is ALWAYS a problem post-surgery. Make sure they take care of that with oral stool softners or laxatives, if possible. The pressure from the constipation pushing on the incisions is painful. The implant surgery has been streamlined a bit since Braydon's implant 6yrs ago. However, again, each child is different. The more medical issues prior to surgery there are, the more it takes to get them recovered after surgery, in general. Do you know if she's having chestwall work done? or what exactly are they implanting? That will help in giving you some examples to see how it works. My best to your sweet one today. |
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Veteran
Posts: 116
Location: Bellevue, Nebraska | Pat, my heart goes out to you. I will be there where you are in exactly 3 wks. What hospital did you have the surgery at? I too, have been wondering what to expect afterwards. I have talked to quite a few nurses, RT and doctors while were down in TX last fall. Every child is different. You are in my prayers. |
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New User
Posts: 4
| Dear Linda:
THank you for your response. THe little girl I take care of is now at the Stollery Children's Hospital in Edmonton, Alberta, Canada. I haven't seen her since her surgery date as I have been out of town. I will see her tomorrow and I will get an update of her condition then. One mother suggested pain management is #1. Constipation is also an issue. She will need memory foam to sleep on more comfortably at home. I was also told not to pick her up under her arms but to scoop her up with one armn under her knees and one arm under her back. God bless your little one dear Linda.
Pat |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | SOMEHOW THIS IS A POST THAT I MISSED...
LINDA, I WANT TO WISH YOUR LITTLE GIRL, ALL THE
BEST IN THE UPCOMING VEPTR SURGERY...
AND ALSO WELCOME PAT, AND THANK YOU FOR SHARING THIS WITH US...
AND WE LOOK VERY FORWARD TO AN UPDATE WHEN YOU SEE YOUR LITTLE PATIENT...
WE HAVE SEVERAL FAMILIES FROM CANADA WHO ARE MEMBERS OF THE "VEPTR BOARD", AND I
AM PRETTY SURE SOME WHO EVEN GO TO THE HOSPITAL YOR HAVE MENTION...
AMAZING HOW SMALL THE WORLD IS SOMETIMES, THANKS TO THE INTERNET...
THE ISSUES THAT HAVE BEEN MENTIONED ARE EXTREMLY IMPORTANT,
PAIN MANAGEMENT, CONSTIPATION, PADDING, AND LIFTING...AMAZING HOW AFTER BEING IN THIS FOR 7 YEARS NOW, I STILL NEED TO REFRESH MY MEMORY FROM TIME TO TIME...SO I TRULY DO ENJOY THESE POST...AND IT IS WONDERFUL THAT WE ARE STILL ALL LEARNING AS WE GO...
I LOOK FORWARD TO HEARING MORE FROM YOU ALL...AND KNOW THAT MY THOUGHTS AND PRAYERS ARE ALWAYS WITH THE "KIDDO'S"...
GOD BLESS... |
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Member
Posts: 22
| DEAR PAT: SHE WILL RECOVER SOOOOOOO FAST. MY DAUGHTER EMILY HAD A VEPTR SURGERY WHEN SHE WAS 2 YEARS OLD YOU DON'T KNOW HOW FAST SHE RECOVERED. I THOUGHT SHE WOULD AT LEAST STAY A WEEK IN THE HOSPITAL OR MORE. THE PT CAME IN THE DAY AFTER SURGERY AND MADE HER GET UP AND WALK AND SHE DID. AFTER THAT PT CAME IN EVERYDAY FOR THREE DAYS AND MADE HER WALK TO PALY ROOM IN THE HOSPITAL AND SHE DID. AFTER 5TH DAY IN THE HOSPITAL THE DOCTORS WHO DID THE SURGERY SO HOW SHE WAS DOING THEY LET HER GO HOME. SHE WILL DO FINE. MY DAUGHTER EMILY SHE WILL HAVE HER 2ND EXPANSION THIS FRIDAY. PRAY FOR HER...... |
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VEPTR Surgery Day
