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Caitlyn, our brave and beautiful 14 year old, did indeed have her septal myectomy at Tufts in Boston on Tuesday of last week. I wanted to wait until she was home and feeling better to post something. She came through with flying colors in every way! Dr. Rastegar did the surgery and immediately after the surgery Marty Maron told us how very pleased he was with the results. She was in CTU for approximately 48 hours and then to a private room until this past Monday, and then flew home yesterday- exactly a week after this major surgery. Caitlyn's resting gradient had most recently measured in the 130's and 140's. Her gradient is now at 0!!!
Day two and three seemed to be the worst for her, with alternating pain and nausea. By Friday night she was feeling a little better, but was sleeping almost constantly and her red count was low so after considerable discussion they decided to give her a unit of blood, which really seemed to help her turn the corner. Saturday she was more alert and was able to take a couple of walks down the hallway. Barry Maron was in Boston for a lecture that day and with Marty made a short surprise visit to her on Saturday evening. Sunday her appetite began to pick up and she was feeling less nausea so she was finally able to watch a movie and the Oscars and start catching up on the volumes of email she had received! Another echo on Monday confirmed the reports from the surgery and so she came on home a day earlier than originally scheduled. She's up and about and looks absolutely great. I know it will take some time for her to get her strength back, but we are absolutely amazed at her recovery thus far. Everyone always says how kids are so resilient and tougher than we give them credit for, but Caitlyn has earned my undying admiration in how she faced this scary event with complete grace and dignity.
Our experience at Tufts could not have been a more positive one; certainly in terms of results, but in every aspect with the doctors and nurses we came away grateful and awed by the amount of care and concern shown to us all. Of the three centers that now perform myectomies regularly (Mayo, Cleveland, and Boston) we actually had many more ties to the other two as we had live and schooled in Minnesota and Cleveland, but our decision to go with Boston because of it's smaller size and primarily because of our relationship with Dr. Maron was confirmed in every way.
It was wonderful meeting Felix and his wife Sandy and I hope his recovery is going well. It was rather an interesting coincidence to have two Atlanta area families having the same surgery at the same place within a week of one another. I'm sorry we missed meeting Pam; I didn't realize there was another HCMAer there at the time!
Thanks to all for the prayers and good wishes sent Caitlyn's way; they're definitely working!
Paul and Elizabeth
Day two and three seemed to be the worst for her, with alternating pain and nausea. By Friday night she was feeling a little better, but was sleeping almost constantly and her red count was low so after considerable discussion they decided to give her a unit of blood, which really seemed to help her turn the corner. Saturday she was more alert and was able to take a couple of walks down the hallway. Barry Maron was in Boston for a lecture that day and with Marty made a short surprise visit to her on Saturday evening. Sunday her appetite began to pick up and she was feeling less nausea so she was finally able to watch a movie and the Oscars and start catching up on the volumes of email she had received! Another echo on Monday confirmed the reports from the surgery and so she came on home a day earlier than originally scheduled. She's up and about and looks absolutely great. I know it will take some time for her to get her strength back, but we are absolutely amazed at her recovery thus far. Everyone always says how kids are so resilient and tougher than we give them credit for, but Caitlyn has earned my undying admiration in how she faced this scary event with complete grace and dignity.
Our experience at Tufts could not have been a more positive one; certainly in terms of results, but in every aspect with the doctors and nurses we came away grateful and awed by the amount of care and concern shown to us all. Of the three centers that now perform myectomies regularly (Mayo, Cleveland, and Boston) we actually had many more ties to the other two as we had live and schooled in Minnesota and Cleveland, but our decision to go with Boston because of it's smaller size and primarily because of our relationship with Dr. Maron was confirmed in every way.
It was wonderful meeting Felix and his wife Sandy and I hope his recovery is going well. It was rather an interesting coincidence to have two Atlanta area families having the same surgery at the same place within a week of one another. I'm sorry we missed meeting Pam; I didn't realize there was another HCMAer there at the time!
Thanks to all for the prayers and good wishes sent Caitlyn's way; they're definitely working!
Paul and Elizabeth
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