Anyone at TCH July 12-17th?
Anyone at TCH July 12-17th?
My daughter is having bicept lengthing on July 15th. Is anyone else going to be at TCH then? I'd love to meet other families. We are also seeing a Dr. Klubec about a possible hand surgery (gracis transfer S/P) on the 12th. Has any one else heard of this type of surgery or the doctor?
Thanks in advance.
Denise
Thanks in advance.
Denise
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admin
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Re: Anyone at TCH July 12-17th?
MY SON IS 6 MONTHS OLD AND HE IS HAVING HIS PRIMARY SURGERY THE 16TH. WE HAVE AN EVALUATION ON THE 15TH. WE WILL PROBABLY BE THERE FOR A WEEK.
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carron
Re: Anyone at TCH July 12-17th?
Hey We will be down on the 12 for clinic and surgery the 13 mod-quad you can e-mail me best of luck hope to see you their
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Jennifer in MD
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Re: Anyone at TCH July 12-17th?
Hi Denise, I did e-mail you back. But for the rest we will be in TX the 14th-20th and surgery is the 17th with clinic on the 15th. Hope to meet you all.
Jennifer
Jennifer
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NancyP
Re: Anyone at TCH July 12-17th?
Denise,
We won't be down there at the same time, but I have met Dr. Klebuc and my daughter will have the gracilis transfer in the next couple of years. Kelsey is 5, and just had 4 surgeries. She is having an emg in October to find out if she has any nerves working well enought to graft the muscle to. If not, she will have an intercostal nerve graft before the gracilis transfer. Here is what I know about the gracilis muscle transfer. The Gracilis muscle that they use comes from the inner leg. It is part of 3 muscle groups that makes you put your knees together. They take the smallest one and transplant it into the wrist. They take skin grafts from inner thigh (high, near private area) and graft it over the surgery site. You will be in intensive care for 5-7 days, then a couple of more days in the regular room. Dr. Klebuc told me that he won't do the surgery for kids under 6. Your child has to be still for the 5-7 days in bed, no moving around. The arm will be "tied" to the bed during that time. If there is movement it could tear one of the stitches on the blood vessle and then the muscle could die. Then you have 2 or 3 other surgeries to conceal the skin graft. This will not give independent finger function, but will help with grasp. We are waiting because our daughter is not mature enough to lay still, and I am not willing to risk the muscle dying because we tried too early. This is the info I got for my child, so it may be different for you:) Good luck, ask lots of questions! Dr. Klebuc is a very nice, patient professional man. I really enjoyed meeting him. PS. There is a page on this surgery that Jocey Morales had. Pictures and everything on injurednewborn.com. Go to Maia's page, and there will be links to secondary surgeries, then it is on there (I think that is how to get there, it has been a couple of weeks). Be careful, the pics are graphic, but if you are considering this surgery, you should look. Sorry I wrote a book, but wanted to help with information.
Good luck!
Nancy
We won't be down there at the same time, but I have met Dr. Klebuc and my daughter will have the gracilis transfer in the next couple of years. Kelsey is 5, and just had 4 surgeries. She is having an emg in October to find out if she has any nerves working well enought to graft the muscle to. If not, she will have an intercostal nerve graft before the gracilis transfer. Here is what I know about the gracilis muscle transfer. The Gracilis muscle that they use comes from the inner leg. It is part of 3 muscle groups that makes you put your knees together. They take the smallest one and transplant it into the wrist. They take skin grafts from inner thigh (high, near private area) and graft it over the surgery site. You will be in intensive care for 5-7 days, then a couple of more days in the regular room. Dr. Klebuc told me that he won't do the surgery for kids under 6. Your child has to be still for the 5-7 days in bed, no moving around. The arm will be "tied" to the bed during that time. If there is movement it could tear one of the stitches on the blood vessle and then the muscle could die. Then you have 2 or 3 other surgeries to conceal the skin graft. This will not give independent finger function, but will help with grasp. We are waiting because our daughter is not mature enough to lay still, and I am not willing to risk the muscle dying because we tried too early. This is the info I got for my child, so it may be different for you:) Good luck, ask lots of questions! Dr. Klebuc is a very nice, patient professional man. I really enjoyed meeting him. PS. There is a page on this surgery that Jocey Morales had. Pictures and everything on injurednewborn.com. Go to Maia's page, and there will be links to secondary surgeries, then it is on there (I think that is how to get there, it has been a couple of weeks). Be careful, the pics are graphic, but if you are considering this surgery, you should look. Sorry I wrote a book, but wanted to help with information.
Good luck!
Nancy
