We have a couple of updates from our marathon (6 hour) visit to TCH today. Both boys had a pulmonary appointment to do a little check in before the evil virus season kicks in. That appointment went really well. So far neither of them have had any lung issues since being home and nobody is on breathing treatments or respiratory medication. Since they are doing so well we are going to do a sedated lung function test on each of the boys the week of the 20th. The results of this test will tell us how much and how fast air is going in and coming out of their lungs and give us an idea of how well their lungs will handle a cold or common respiratory virus. We will update after those results are in. This afternoon Charlie had his weekly eye check with the Pediatric Retina Specialist. We have basically been dancing on the edge of surgery for weeks now and unfortunately today Charlie was called to dance. The fibrous growth that is pulling on his retina is now pulling more and we need to act quickly to keep his vision. I really can't say enough about the ophthalmology team at TCH. Every doctor, nurse, specialist and scheduler have gone out of their way to explain things and make us feel at ease with the plan of care for our boys. We have been seeing this team every week since Charlie was paroled on April 7th. So while nobody wanted surgery to be the path we had to go down, we completely trust this team that this is the right course to take. Surgery will be Monday morning and hopefully it will be out patient. There are significant risks to doing the surgery which is why we have not gone ahead with it until now. We will keep everyone posted.
Here's a few pics of Mr. Beans aka Charlie and Mr. Bacon aka Henry.
