Hospital Visits
Hey Max fans,
The move towards transplant continues. We visited University of Minnesota this week Mon and Tues. to discuss Max's treatment. We were very impressed with their Hurlers experience. They have transplanted the most Hurlers kids in the country. Max had nine appointments over the two days. We met with Dr. Grewal of metabolic storage disorders, as well as ENT, pulminology, social work, neurology, neuro-psych, and more.
We also met a few Hurlers kids in the waiting room. It was so strange. We walked in and we recognized a girl we've seen online, and the look we received from the Dad was unmistakable. He could pick out Max as a Hurler child from across the room. The disease is so rare but they have so many patients there.
Max did great at all of his check-ups. He scored very well on the neuro-psych tests. He is developmentally at the level of a 9 month old (his adjusted age), and not far off from his chronological age, 11 months. A poor score on this test is the biggest contra-indicator for transplant, so we were very glad he did well.
As it stands right now, they would not recommend a tonsillectomy or a shunt. MN believes that the best treatment for hydrocephalus in Hurlers patients is transplant. These are two areas that differ from Duke. I think Duke removes all tonsils before transplant, and they shunt based on cerebral spinal fluid pressure.
Their biggest area for concern is Max's lungs. As you may or may not know, Max has infantile asthma. Hurler kids are more predisposed to lung issues during transplant, and Max would be at a higher risk. If we choose MN, we'd have to go there a few weeks before transplant to give his lungs a "tune-up" and make them as stable as possible.
They took Grace's blood again to check her enzyme level. As some of you know, she is an exact match for Max's HLA type. But they were disappointed that her level was only 11, and are hoping it comes back higher next time. If it is still 11 they probably would not use her as Max's donor, but would go for cord blood instead.
We also toured the Ronald McDonald house and were pleasantly surprised. It is a housing option for us if we go there, although we worry about exposing Max to so many people and germs after transplant. It has many amenities for us and Grace and a location that make it a very viable option for our family. Otherwise, we can put our name on a waiting list for a University apartment.
We were supposed to go to Duke this morning and meet with Dr. Kurtzberg from their transplant unit, but mother nature had other ideas. Grace was up all night with the stomach flu. Mike and I got no sleep and then I felt sick this morning. The plans have been changed to next week Tues. We are disappointed, as we wanted to make our decision this weekend so we can get the ball rolling. I guess it will be postponed a week. We have been asking for a sign as to which place to choose and wondered if this was it!
Duke will be the last place we visit. After this trip we will make our decision to the best of our ability and we are hopeful that we will be able to make it with confidence and with no regrets.
As this letter indicates, we are deeply immersed in the medical nuances of transplant and it in necessary for us to remain on task. This moves us out of some of the earlier discussions we raised as far as fundraising and research. These remain, however, a major goal for us. We first must help our guy get through his transplant, and if successful, he will be a daily inspiration for these other goals.
Max started "cruising" along the side of his crib this week as well as saying ma and da for the first time. He continues to be a source of so much
joy, determination, and focus that he is an inspiration. And his
performances at these many many appointments is directly responsible for our feeling the most hopeful we have felt in some time.
We will keep you posted.
-Margaret and Mike
The move towards transplant continues. We visited University of Minnesota this week Mon and Tues. to discuss Max's treatment. We were very impressed with their Hurlers experience. They have transplanted the most Hurlers kids in the country. Max had nine appointments over the two days. We met with Dr. Grewal of metabolic storage disorders, as well as ENT, pulminology, social work, neurology, neuro-psych, and more.
We also met a few Hurlers kids in the waiting room. It was so strange. We walked in and we recognized a girl we've seen online, and the look we received from the Dad was unmistakable. He could pick out Max as a Hurler child from across the room. The disease is so rare but they have so many patients there.
Max did great at all of his check-ups. He scored very well on the neuro-psych tests. He is developmentally at the level of a 9 month old (his adjusted age), and not far off from his chronological age, 11 months. A poor score on this test is the biggest contra-indicator for transplant, so we were very glad he did well.
As it stands right now, they would not recommend a tonsillectomy or a shunt. MN believes that the best treatment for hydrocephalus in Hurlers patients is transplant. These are two areas that differ from Duke. I think Duke removes all tonsils before transplant, and they shunt based on cerebral spinal fluid pressure.
Their biggest area for concern is Max's lungs. As you may or may not know, Max has infantile asthma. Hurler kids are more predisposed to lung issues during transplant, and Max would be at a higher risk. If we choose MN, we'd have to go there a few weeks before transplant to give his lungs a "tune-up" and make them as stable as possible.
They took Grace's blood again to check her enzyme level. As some of you know, she is an exact match for Max's HLA type. But they were disappointed that her level was only 11, and are hoping it comes back higher next time. If it is still 11 they probably would not use her as Max's donor, but would go for cord blood instead.
We also toured the Ronald McDonald house and were pleasantly surprised. It is a housing option for us if we go there, although we worry about exposing Max to so many people and germs after transplant. It has many amenities for us and Grace and a location that make it a very viable option for our family. Otherwise, we can put our name on a waiting list for a University apartment.
We were supposed to go to Duke this morning and meet with Dr. Kurtzberg from their transplant unit, but mother nature had other ideas. Grace was up all night with the stomach flu. Mike and I got no sleep and then I felt sick this morning. The plans have been changed to next week Tues. We are disappointed, as we wanted to make our decision this weekend so we can get the ball rolling. I guess it will be postponed a week. We have been asking for a sign as to which place to choose and wondered if this was it!
Duke will be the last place we visit. After this trip we will make our decision to the best of our ability and we are hopeful that we will be able to make it with confidence and with no regrets.
As this letter indicates, we are deeply immersed in the medical nuances of transplant and it in necessary for us to remain on task. This moves us out of some of the earlier discussions we raised as far as fundraising and research. These remain, however, a major goal for us. We first must help our guy get through his transplant, and if successful, he will be a daily inspiration for these other goals.
Max started "cruising" along the side of his crib this week as well as saying ma and da for the first time. He continues to be a source of so much
joy, determination, and focus that he is an inspiration. And his
performances at these many many appointments is directly responsible for our feeling the most hopeful we have felt in some time.
We will keep you posted.
-Margaret and Mike
posted by Mike Ciacciarelli
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