First a quickie introduction... my son is 7 1/2 and was born with congenital diaphragmatic hernia. As a result he has short bowel syndrome (gets nutrition via an IV in addition to a gastric tube) and severe scoliosis diagnosed at age 2. He had grow rods with 4 surgeries for placement and lengthenings, with a 5th for his fusion when he was nearly 100 degrees at age 5 from T1-L2.
Following the fusion, his pulmonary function diminished to the point that he is now dependent on Bipap at night as well as O2 almost 24/7 (he only has the equivelant of maybe one poorly functioning lung due to the CDH and intubations... 28 surgeries). Because of the fusion that poorly functioning lung (similar to someone with emphysema) wont be growing as a normal lung would, giving him a 5 yr old size lung. Not good.
Prior to the fusion he was evaluated in TX for the titanium rib, found to be not a candidate. A few months ago he was evaluated in Seattle for the same program, but with my hopes and prayers that Dr S would be able to come up with something that would help the continuation of his pulmonary detioration. As expected he was denied the rib, however Dr S took Sean's case to some national meetings/conferences where Sean and other special cases were discussed at length. They agreed that the rib would not be a good choice for Sean, however they still felt that there was a possibility he could be helped.
He will be having further testing in August when we go to Seattle for his sleep study, with the idea that all going well he may be a candidate for a 4-6 week stint in Halo traction to try to help improve his pulmonary function. It would mean most if not all of the 4-6 weeks would be spent in the hospital, 10 hrs from home, but if it could improve his pulmnary status back a year or 2 before his curve started re-progressing (10-12 degrees of a kyphotic type curve near the top of his fusion and beyond) then it just might be worth doing. As it stands now, we have been told he will likely get to a point where we need to address the idea of a trach/vent combo to support him, knowing that he wont ever get off. This could potentially postpone that...
Anyway... I was wondering if anyone has any experience with the Halo traction, thoughts or ideas, as we go forward with the testing prior to making any decision I am hoping to make myself as well informed as possible so I can ask questions that will help us to make the best decision possible for my little guy.
Thanks for your help, Heidi
Following the fusion, his pulmonary function diminished to the point that he is now dependent on Bipap at night as well as O2 almost 24/7 (he only has the equivelant of maybe one poorly functioning lung due to the CDH and intubations... 28 surgeries). Because of the fusion that poorly functioning lung (similar to someone with emphysema) wont be growing as a normal lung would, giving him a 5 yr old size lung. Not good.
Prior to the fusion he was evaluated in TX for the titanium rib, found to be not a candidate. A few months ago he was evaluated in Seattle for the same program, but with my hopes and prayers that Dr S would be able to come up with something that would help the continuation of his pulmonary detioration. As expected he was denied the rib, however Dr S took Sean's case to some national meetings/conferences where Sean and other special cases were discussed at length. They agreed that the rib would not be a good choice for Sean, however they still felt that there was a possibility he could be helped.
He will be having further testing in August when we go to Seattle for his sleep study, with the idea that all going well he may be a candidate for a 4-6 week stint in Halo traction to try to help improve his pulmonary function. It would mean most if not all of the 4-6 weeks would be spent in the hospital, 10 hrs from home, but if it could improve his pulmnary status back a year or 2 before his curve started re-progressing (10-12 degrees of a kyphotic type curve near the top of his fusion and beyond) then it just might be worth doing. As it stands now, we have been told he will likely get to a point where we need to address the idea of a trach/vent combo to support him, knowing that he wont ever get off. This could potentially postpone that...
Anyway... I was wondering if anyone has any experience with the Halo traction, thoughts or ideas, as we go forward with the testing prior to making any decision I am hoping to make myself as well informed as possible so I can ask questions that will help us to make the best decision possible for my little guy.
Thanks for your help, Heidi
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