On Friday, Tim and I took Dustin to Nashville to see a new pediatric surgeon at Vanderbilt. We had an appointment scheduled about one and a half weeks ago to see the pediatric surgeon at Cincinnati. Unfortunately, our insurer would not agree to cover the visit (or a subsequent surgery) in-network. On the bright side, Dustin has a wonderful case manager with the insurer who was able to identify a group of pediatric surgeons at the University of Vanderbilt Children's Hospital who have treated patients with CCAM.
In any event, we made the trip Thursday evening when it was normally Dustin's sleeping time. Friday morning, we headed over to the Hospital 2 hours early, hoping that they would be able to bump up Dustin's CT. As it turns out, the Radiology Department was about an hour and half behind, so we had to wait quite a while before Dustin's testing was completed.
Dustin had to have anesthesia for the diagnostic test. The sedation team decided to administer the anesthesia through an IV, since Dustin had to have one anyway for the contrast material that was ordered with the CT. After waiting a half hour for the first dose of sedation to kick in, the nurses decided that Dustin would need a second dose! It surprised the nurses when Dustin took 20 minutes to fall asleep with the second dose of sedation!
It was hard to be in the imaging room and see all of the clinicians gathered around the computer screen in the viewing and operating area. They were very clearly talking about what they saw in our son's chest; we wanted to hear!
When the test was over, we waited for Dustin to wake (only took him 5-10 minutes), feed him and made our way to Dr. Yang's office. Dr. Yang was able to confirm that the mass in Dustin's lung is indeed a CCAM. It is larger than we had originally thought and thus, a surgeon may remove the entire upper lobe of the right lung. We also learned that there was currently no infection in the mass. This was a relief for us, given that Dustin had had a cough and running nose for about a month. The surgeon spoke with us regarding the risks and benefits of surgery. Given this information, Tim and I believe that the best option is surgery.
Dr. Yang will be leaving Vanderbilt to move to St. Louis at the end of February. When I spoke with him by telephone prior to our visit, he said that he could perform the surgery at the beginning of February. During our visit, he relayed to us that he was no longer able to schedule more surgeries prior to his departure. So, at this point we are waiting to hear from one of Dr. Yang's partners so we can evaluate his/her expertise to perform the procedure.
In any event, we made the trip Thursday evening when it was normally Dustin's sleeping time. Friday morning, we headed over to the Hospital 2 hours early, hoping that they would be able to bump up Dustin's CT. As it turns out, the Radiology Department was about an hour and half behind, so we had to wait quite a while before Dustin's testing was completed.
Dustin had to have anesthesia for the diagnostic test. The sedation team decided to administer the anesthesia through an IV, since Dustin had to have one anyway for the contrast material that was ordered with the CT. After waiting a half hour for the first dose of sedation to kick in, the nurses decided that Dustin would need a second dose! It surprised the nurses when Dustin took 20 minutes to fall asleep with the second dose of sedation!
It was hard to be in the imaging room and see all of the clinicians gathered around the computer screen in the viewing and operating area. They were very clearly talking about what they saw in our son's chest; we wanted to hear!
When the test was over, we waited for Dustin to wake (only took him 5-10 minutes), feed him and made our way to Dr. Yang's office. Dr. Yang was able to confirm that the mass in Dustin's lung is indeed a CCAM. It is larger than we had originally thought and thus, a surgeon may remove the entire upper lobe of the right lung. We also learned that there was currently no infection in the mass. This was a relief for us, given that Dustin had had a cough and running nose for about a month. The surgeon spoke with us regarding the risks and benefits of surgery. Given this information, Tim and I believe that the best option is surgery.
Dr. Yang will be leaving Vanderbilt to move to St. Louis at the end of February. When I spoke with him by telephone prior to our visit, he said that he could perform the surgery at the beginning of February. During our visit, he relayed to us that he was no longer able to schedule more surgeries prior to his departure. So, at this point we are waiting to hear from one of Dr. Yang's partners so we can evaluate his/her expertise to perform the procedure.
1 comment:
Thanks for keeping us updated. We think of you all often. He is such a happy guy. It's been great to follow him in your blog. We love you all. Keeping you in our prayers,
Michelle
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