We are home from Dallas and our minds are overloaded with information about the treatment of Craniosynostosis.
Yesterday we met with Dr. Fearon. He has done a great deal of research on Craniosynostosis specifically. He is a very knowledgeable and personable man. He has a wonderful reputation among his former clients. He will even correspond through e-mail with anyone in the country about their child- at no charge.
Dr. Fearon is a strong believer in "the big surgery." He recommends that Ben have a Cranial Vault Reconstruction in May, before he turns 6 months old. This surgery requires a zig-zag incision from ear-to-ear. The bones would then be cut and taken out to be "remolded" into the proper shape. They would then be replaced using disolvable sutures (Dr. Fearon does not use any plates or screw). They would then sew Ben back up and he would have his head-shape corrected and any extra pressure on the brain would be eliminated. Ben would stay in PICU for one night and the regular pediatric floor for one night and then go home.
The Pros to this procedure are: full visibility/less risky (if there is any bleeding, the surgeons can see it and deal with it), automatic results (no helmet needed, all of the changes in shape occur during surgery), time-tested (Dr. Fearon does 100 of these surgeries each year, 50 just like Ben's), Dr. Fearon (he has far more experience that any other doctor in Dallas, and possibly the country, with Ben's condition), less likely to need a 2nd surgery. The cons are: harder recovery (lots of swelling and longer hospital stay), larger scar, seems to be much more invasive (taking skull apart and remolding it).
With all of that said, let me tell you a little bit about Dr. Fearon and how he does things. He recommends that patients take Procrit, a drug which will increase the red blood count, for 3 weeks before surgery. This decreases the chance of blood transfusion with very few risks. All of the risks he described to us only occur in adults- he has never had, or heard of, a bad side-effect with a child. He also uses a machine he calls the "cell saver" which sucks up the blood, filters it, and gives it back to the patient. This also reduces the risk of a blood transfusion. Dr. Fearon does not allow family blood to be used for transfusions, because of a risk (which I can't recall at the moment).
Needless to say, it is a lot of information to take in. It is not a decision that anybody wants to make: which way to cut your baby's head open. But, it is one that needs to be made, and pretty soon. We are definitely still undecided. There are obvious pros and cons to each route, and as Dr. Genecov said, there is no perfect way.
J.P. and I will be discussing all of this in the days to come and we will keep you all up-to-date on our decision.
Yesterday we met with Dr. Fearon. He has done a great deal of research on Craniosynostosis specifically. He is a very knowledgeable and personable man. He has a wonderful reputation among his former clients. He will even correspond through e-mail with anyone in the country about their child- at no charge.
Dr. Fearon is a strong believer in "the big surgery." He recommends that Ben have a Cranial Vault Reconstruction in May, before he turns 6 months old. This surgery requires a zig-zag incision from ear-to-ear. The bones would then be cut and taken out to be "remolded" into the proper shape. They would then be replaced using disolvable sutures (Dr. Fearon does not use any plates or screw). They would then sew Ben back up and he would have his head-shape corrected and any extra pressure on the brain would be eliminated. Ben would stay in PICU for one night and the regular pediatric floor for one night and then go home.
The Pros to this procedure are: full visibility/less risky (if there is any bleeding, the surgeons can see it and deal with it), automatic results (no helmet needed, all of the changes in shape occur during surgery), time-tested (Dr. Fearon does 100 of these surgeries each year, 50 just like Ben's), Dr. Fearon (he has far more experience that any other doctor in Dallas, and possibly the country, with Ben's condition), less likely to need a 2nd surgery. The cons are: harder recovery (lots of swelling and longer hospital stay), larger scar, seems to be much more invasive (taking skull apart and remolding it).
With all of that said, let me tell you a little bit about Dr. Fearon and how he does things. He recommends that patients take Procrit, a drug which will increase the red blood count, for 3 weeks before surgery. This decreases the chance of blood transfusion with very few risks. All of the risks he described to us only occur in adults- he has never had, or heard of, a bad side-effect with a child. He also uses a machine he calls the "cell saver" which sucks up the blood, filters it, and gives it back to the patient. This also reduces the risk of a blood transfusion. Dr. Fearon does not allow family blood to be used for transfusions, because of a risk (which I can't recall at the moment).
Needless to say, it is a lot of information to take in. It is not a decision that anybody wants to make: which way to cut your baby's head open. But, it is one that needs to be made, and pretty soon. We are definitely still undecided. There are obvious pros and cons to each route, and as Dr. Genecov said, there is no perfect way.
J.P. and I will be discussing all of this in the days to come and we will keep you all up-to-date on our decision.
This is a picture of Ben's X-Ray. You can see how long the back of his head seems to be. This is because the suture at the top of his head, where it is bright white, has closed. That is what this journey is all about- fixing Ben's big head!
(I taped the x-ray to a window, so you see me in the reflection and our neighbors house through his skull!)
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