We've decided on Minnesota
Well, we finally decided. We will be going to Fairview Hospital at the University of Minnesota for Max's transplant.
As you know, we have been researching facilities for the past few weeks. We were deciding between Children's Memorial Hospital in Chicago, Duke University Medical Center in NC and Fairview. We ruled out Children's pretty early on because while they had much experience with transplants, they had little experience treating children with Hurler Syndrome. We had a very hard time, however, deciding between MN and Duke, but we finally did pick MN for the following reasons ...
1. We had a much more thorough visit at MN. We got to meet many of the sub-specialists who would be treating Max and feel confident in their expertise. Our trip to Duke was much shorter. We only met with the transplant doctor, and while we have tremendous confidence in her, we feel more secure having met the other doctors at MN. This is especially true of the pulminogist, who will closely following Max due to his history of lung problems.
2. MN seems less likely to shunt Max for his hydrocephalus. While they may end up having to do so, they use several criteria to determine whether or not a shunt is needed. Duke bases the decision to shunt on lumbar puncture. While MN does perform lumbar punctures, they use several other methods as well. If we can avoid a shunt we'd like to for two reasons. First, it can be a major complication during transplant if it becomes infected. Second, we'd like to avoid a life time of having to deal with the shunt. While some patients experience no problems with their shunts, we have a family friend with a child who has 18 shunt related surgeries. She said if you can avoid a shunt, avoid it. If Max does end up needing one he will certainly get it and we will deal with it, but if not that would be great.
3. On a less significant note, MN is closer to home, making it easier for travel and for people to visit us.
Our tentative date to begin testing in MN is July 14th. Things are going to become very crazy for us now.
We thank all of you for your support during this difficult decision. We will keep you posted on any updates. Look for Mighty-Max.com to be up very soon.
Love,
Margaret, Mike. Grace and Max
As you know, we have been researching facilities for the past few weeks. We were deciding between Children's Memorial Hospital in Chicago, Duke University Medical Center in NC and Fairview. We ruled out Children's pretty early on because while they had much experience with transplants, they had little experience treating children with Hurler Syndrome. We had a very hard time, however, deciding between MN and Duke, but we finally did pick MN for the following reasons ...
1. We had a much more thorough visit at MN. We got to meet many of the sub-specialists who would be treating Max and feel confident in their expertise. Our trip to Duke was much shorter. We only met with the transplant doctor, and while we have tremendous confidence in her, we feel more secure having met the other doctors at MN. This is especially true of the pulminogist, who will closely following Max due to his history of lung problems.
2. MN seems less likely to shunt Max for his hydrocephalus. While they may end up having to do so, they use several criteria to determine whether or not a shunt is needed. Duke bases the decision to shunt on lumbar puncture. While MN does perform lumbar punctures, they use several other methods as well. If we can avoid a shunt we'd like to for two reasons. First, it can be a major complication during transplant if it becomes infected. Second, we'd like to avoid a life time of having to deal with the shunt. While some patients experience no problems with their shunts, we have a family friend with a child who has 18 shunt related surgeries. She said if you can avoid a shunt, avoid it. If Max does end up needing one he will certainly get it and we will deal with it, but if not that would be great.
3. On a less significant note, MN is closer to home, making it easier for travel and for people to visit us.
Our tentative date to begin testing in MN is July 14th. Things are going to become very crazy for us now.
We thank all of you for your support during this difficult decision. We will keep you posted on any updates. Look for Mighty-Max.com to be up very soon.
Love,
Margaret, Mike. Grace and Max
posted by Mike Ciacciarelli
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