Isaac had a good week in Philadelphia, he met A LOT of doctors and had a few tests. As usual, he made a great impression and was already pretty well loved when we headed home Friday. Three of his consults with surgeons were on Wednesday, and they seemed to all feel the same way.
I met with Dr. Campbell (the creator of the rib lengthening surgery we were hoping to use) on Friday. He had just met with the team that evaluated Isaac – and they agreed that the risks outweigh the benefits when it comes to this surgery right now. In all honesty, we are relieved. As much as we felt this surgery would be the step Isaac needs to comfortably lose his trach, it is a very long commitment. Kids get rods replaced every few years, and the rods themselves have to be lengthened every 6 months or so. Add to that the risk of infection and reaction to the rods, and we were pretty uneasy with it.
We took Isaac to the team in Philly because they are the best at this, and they work as a team. We liked the idea of lung doctors, neurosurgeons, orthopedic surgeons and general surgeons working together. We were so impressed by them. As we talk Dr. Campbell explained that their lung doctor has ideas about others ways we can work toward losing the trach and he is contacting Isaac’s doctor here.
Dr. Campbell wants Isaac back in 9 months to see how he is, and discuss further steps. He explained that this decision could change, if the ideas they offered don’t change Isaac’s status in any way, we may need to discuss surgery.
So – why aren’t we doing this surgery now? It’s kind of for the same reason we put off even looking into it for a while. Isaac’s right lung is damaged, repeated surgeries have not only left it scarred, but also probably pretty well adhered to the bottom of his fused ribcage. By forcing the ribcage to grow and stretch we could really damage that right lung more, which is the opposite of what we are trying to do…. which is scary. We find ourselves in a place where what we need to do something more, but the something more could really hurt him.
We plan to get copies of the studies they did in Philly and discuss those studies and the ideas of the Philly doctors with our local doctors and see what we can come up with.
Isaac has never been anything short of amazing, we know his trach will come out, we just need to work a little bit harder to make it happen!

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