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First surgery right around the corner
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nicki_jarvis
Posted 2010-09-20 12:04 PM (#39874)
Subject: First surgery right around the corner


New User

Posts: 3

My daughter Nova was born w/ Spina Bifida..Shes going 2b 8 in just a few days..She also has Scoliosis, 2 the point where its crushing her little organs.And shes tiny already understand. Her little sister is about twice the size she is. Well, as luck would have it, Nova has been going 2 Shriner"s Hospital since she was born and was born and spent all of her NICU time at Children's Hospital in St. Louis. Along w/ about after her life. The thing is that shes getting so much worse so fast that the only thing the doctors can think of 2 do is put 2 Veptrs in. She is going in for her surgery on the 27th of this month and her father and i are starting 2 get so scared. We have tried 2 do do as much research and find as much info as we can but there are so many things. And then i found this site. We are just don't sure of what 2 expect. So many question!! Like is it going 2 effect her movement, the doctors said they can come undone, how likely is that, shes in a wheelchair is that going 2 have an effect, what about therapy and handling her, how fragile are kids after and later down, will i have 2b extra extra careful when we play(not saying we aren't already) and so many more but i guess that's normal 2 have so many. Shes just such a sweet and loving little girl and she been through so much already. 6 surgeries in like the first 6 months and hospital visits and stays off and on since. And like i said w/ her surgery being like a week away.. So many things..
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kchristensen
Posted 2010-09-21 1:35 AM (#39877 - in reply to #39874)
Subject: RE: First surgery right around the corner



Veteran

Posts: 167
1002525
Location: Phoenix, AZ
Hi Nicki,
It's nice to have you on the site. I have found it very helpful. Carter just had his veptrs placed on August 25th. He is 19 months old and has had four prior surgeries for other things. One of them was a tethered spinal cord... spina bifida. It sounds like your daughter Nova also had to have surgery for that. Carter's was probably less complicated than Nova's, but it still was a very scary surgery. The VEPTR is a difficult one too, and everyone has different experiences. Carter's curve was at 85 degrees before the surgery, and is now at 65 degrees. It should get better as the expansions continue.

You asked about movement. Carter was walking prior to the surgery. He had surgery on a Wednesday and was walking again on Monday, his sixth day in the hospital. The day of the surgery is tough because when they bring her back, she will have a lot of wires, IV's, and probably drainage tubes to allow blood to flow out of her body where the surgery was so that she can heal faster. A lot of the time, they also leave the breathing tube in. It's so important to keep in mind that everyone's healing process is different, but I wanted to share ours with you since it's pretty fresh in my mind. He woke up only a couple of times that first day and his first words were, "Uh oh". I felt so terrible because we knew he was uncomfortable. They had him on a great cocktail of medicine, so he rested pretty soundly that first day and night.

The second day was off and on being awake, but the pain was still managed very well. The hardest part was not being able to hold him. I think there were a few reasons for this. One, is that he was more comfortable laying on the bed and not moving. They changed his position on a regular basis, from left, to right, to back, but that was to prevent bed sores and something else that I don't remember now. He was out of it for most of the time, so he really wasn't crying for me to hold him. he just wanted me close. The second thing is that he had an IV going to his heart. That IV is pretty sensitive and can do damage if it is moved. It can also quickly cause an infection of anything gets into that area. I don't know if they will let you hold your child until that is gone.

Moving to the general surgical floor was probably the most difficult because they start coming off of some IV medicine and they start giving them less potent stuff. My advice is to express your concerns freely to the nurses and doctors. They are usually pretty good about listening when a parent says that their child is in pain.

As far as movement goes, Carter does move differently now. His back is much straighter, so it feels different to him. He also needs help sitting and standing up on occasion, when prior to the surgery, he didn't need help. The doctors told us that it is important not to lift him under his arms. His muscles have already been stretched so much, so that would really hurt him. We have to hold one hand behind his shoulders and scoop under his bottom. This was difficult at first, but now it is second nature. He also wasn't moving as much at night as he used to, but I think that is starting to slowly come back as well. He doesn't bend the same either. He used to bend with his waist, and now he bends with his knees. He had two rods placed; one rib to rib and the other rib to spine.

You also asked about the kids being fragile. We are less than a month out from surgery and I have been pretty careful with Carter. We could give Carter a bath a week after the surgery, but all the steristrips stayed on for about two weeks. We were told that he could have a bath with low water so that it wasn't soaking the wounds. They didn't want any bacteria getting in there. He has fallen on his bottom and fallen forward a few times. It has definitely hurt him, but he bounces back pretty quickly. Just three days ago we were packing to go out of town and I had my back turned to my son when an adult size dresser fell on him. Luckily I caught most of the dresser, but a drawer still fell on him. He cried for about 10 minutes, but mostly because he was scared. His rods were completely fine. I know another child who fell over in her stroller and her rods were also fine. I think there is a greater chance of them moving on the ribs than actually coming apart. I've never actually heard of rods that came apart, but that's not to say it hasn't happened.

For us it was important to let Carter show us what he wanted to do. I think we just have to follow our child's lead and try to support them as much as we can.

I hope everything goes well for your family.

Kristy
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kchristensen
Posted 2010-09-21 1:37 AM (#39878 - in reply to #39874)
Subject: RE: First surgery right around the corner



Veteran

Posts: 167
1002525
Location: Phoenix, AZ
I just saw your picture in the albums. You have two beautiful girls!
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nicki_jarvis
Posted 2010-09-21 1:55 AM (#39882 - in reply to #39874)
Subject: Re: First surgery right around the corner


New User

Posts: 3

Thank you..Nova cant feel anything from her chest down..So it prob wont be that bad as far as pain goes..It will prob help a great deal w/ her sitting in her wheelchair..(when i fell she can go back in w/o hurting herself)..And thank you, ur son is so handsome..
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Rachel
Posted 2010-09-21 4:58 PM (#39886 - in reply to #39874)
Subject: Re: First surgery right around the corner



Regular

Posts: 65
2525
Location: Utah
Our little guy also has Spina Bifida. He is 5 years old. He had his VEPTR surgery a little over a year ago. He was in the hospital for about 5 days after his initial surgery. Recovery was tough. It was a couple of weeks before he could really walk in his walker without a lot of pain. We have had some issues with infection and one migration (rod moving from its place, not coming apart). The 2 expansion surgeries so far have been a breeze, compared to the initial. Hardly any pain and a quick recovery. As far as his movement, he is just as active as he was before surgery. Like Kristy mentioned, the only difference we really see is in the way he bends down. We, of course,we like him to be careful when he plays, but to he honest he still wrestles with his brother and climbs around with his friends just like he did before. None of this is easy, but for us, seeing such a dramatic improvement in his curve has been worth it. In a lot of ways it is the waiting that is the worst part of this. We wish you all the best!!!
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Zoes Nana
Posted 2010-09-21 7:43 PM (#39890 - in reply to #39874)
Subject: Re: First surgery right around the corner



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
WELCOME AND THANK YOU FOR SHARING NOVA WITH US...
ZOE HAS BEEN A 'VEPTR KIDDO' NOW OVER 10 YEARS...
SHE LIKE NOVA WAS 'GETTING WORSE-FAST'....THE IMPLANTS HAVE ALLOWED ZOE THE ROOM SHE NEEDS
TO BREATH, AND GIVEN HER A WONDERFUL QUALITY OF LIFE...THIS IS NOT AN EASY ROAD TO TRAVEL ONE...
ZOE WILL ON NOV 3TH HAVE HER 34 TH SURGERY....BUT WE WOULD DO IT ALL OVER AGAIN IN A MINUTE...
BECAUSE IT OFFERS A HOPE I STILL FEEL NOTHING ELSE COMPARES TOO...
THANKS AGAIN, AND KEEP US POSTED...AND KNOW THAT OUR THOUGHTS AND PRAYERS ARE WITH YOU....
GOD BLESS...
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nicki_jarvis
Posted 2010-09-23 12:49 AM (#39902 - in reply to #39874)
Subject: Re: First surgery right around the corner


New User

Posts: 3

Thank you all so much..Seeing stats on a piece of paper are a lot different than really hearing what 2 expect(even knowing that every1 is different and no 2 surgeries are going 2b the same) and how much it has helped the ones u love..Im still real scared, and are so nervous my belly is in knots but it really does help..Thank you
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Zoes Nana
Posted 2010-09-23 6:35 AM (#39903 - in reply to #39874)
Subject: Re: First surgery right around the corner



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
'MY BELLY IS IN KNOTS'...
SWEETIE, YOU HANG IN THERE, AND WE KNOW JUST HOW YOU ARE FEELING...
AND WE WILL ALL BE THERE WITH YOU, HANGING ON TIGHT, IN THAT WAITING ROOM ON THE DAY OF SURGERY IN SPIRIT...
GOD BLESS..AND BIG HUGS....
JOHANNA
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