I wish I could say that we received clear answers and a solution from Dr. Kaul and the motility testing in Cincinnati, but we didn't. The report showed subtle neuropathic changes in the upper GI. Subtle. This is both reassuring and confusing. If he has only subtle motility issues, then why hasn't he been able to have bowel movements? If the problem is in the upper GI, why does the colostomy work so well? If his lower GI works normally, then why did it take him eight hours to void an enema? It's confusing.
Dr. Kaul's suggestion was to try a medication called Neurontin, a neurological medication. I don't know if I would be able to tell if it helped with motility, considering he has the colostomy, but if he's having any pain from the intestines, then Neurontin may be able to help. He's been so crabby since the surgery, it would be nice to have something alleviate that for him. Dr. Rosenblum, our regular GI doctor, is consulting with our neurologist before before making a final decision.
Dr. Rosenblum suggested keeping the colostomy for about a year before trying to reconnect. He's hoping that will give Levi time to mature neurologically and cure the motility issue. We also have the option of taking out a portion of the colon when we reconnect. I guess we will just have to wait and see what happens.
It's clear to me now (or it should be!) that I can't figure this out on my own, and that we have pursued all the testing that's out there for this type of issue. Maybe now I can do what I should have done from the beginning -- trust God.
Dr. Kaul's suggestion was to try a medication called Neurontin, a neurological medication. I don't know if I would be able to tell if it helped with motility, considering he has the colostomy, but if he's having any pain from the intestines, then Neurontin may be able to help. He's been so crabby since the surgery, it would be nice to have something alleviate that for him. Dr. Rosenblum, our regular GI doctor, is consulting with our neurologist before before making a final decision.
Dr. Rosenblum suggested keeping the colostomy for about a year before trying to reconnect. He's hoping that will give Levi time to mature neurologically and cure the motility issue. We also have the option of taking out a portion of the colon when we reconnect. I guess we will just have to wait and see what happens.
It's clear to me now (or it should be!) that I can't figure this out on my own, and that we have pursued all the testing that's out there for this type of issue. Maybe now I can do what I should have done from the beginning -- trust God.
Happy picture taken in March :) Looking forward to seeing those toothy grins again!
God gave us doctors to help with things, kiddo, so going to one for help doesn't mean that you're not trusting Him! It's especially hard as a parent to watch your child have problems and not have all of the answers. Maybe this trip you made is the start of answers or blessed someone else, who really needed God's touch. You may never know, but you do know that God is using all of this for the good of His people...which means YOU!
ReplyDeleteJodi, thanks so much for those very uplifting words! I really needed to hear that! Love ya :)
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