What's Next?

Brett has been through a lot of "testing" lately with the CT Scan and various lab work done to get more information about how his immune system works (or doesn't work). The results of the CT scan were less than great. The films showed various areas of lung collapse and what appears to be exacerbation or tissue damage- though we're not sure of the extent or whether there is irreversible damage. His lung disease looks quite advanced for his age. In response to this new data, our doctor has continued to research other cases that are similar to Brett's and to consult other pulmonologists as well as doctors in other fields (all employed at UNC) to create a treatment plan that might benefit Brett the most. 

The next step in creating that treatment plan is to get as much information about his condition as possible through the various tests. Some of the tests have already been done, and some will be repeated on our next clinic date, this coming Monday, March 22. The main test at clinic on Monday will be his infant PFTs (pulmonary function tests). They aren't routinely done on infants, as you have to be old enough to cooperate (Mark has been through them before). So if you have the need to perform the tests on an infant, he has to be sedated or under general anesthesia. Because of Brett's oxygen needs at the moment, he will be going under general anesthesia for the procedure. It is not an invasive procedure - they just hook him up to various machines and force his lungs to expand, contract, hold the breath, etc. The tests are scheduled for Monday afternoon so it will be sometime early next week before I have any results to share.

Also, many of you have told me that you view my posts through a reader and that you rarely visit the actual website. If this describes you, I would like to call your attention to a little gadget I added that posts "Today's Status." It is in red at the top right hand corner of the blog - I added this so that if I fail to be explicit in my post as to where we are that day, you can know. It will either read "we are in the hospital today" or "we are not in the hospital today." I thought this might be useful because when folks call me, this is one of the main questions they ask. Now, in case you want to know, there it is!