Things were right on schedule with them taking him back at just before 2. The plan was for Pulmonary to do his bronchoscopy and get a good look at his lungs and take a sample of the mucus from down there to test for bacteria, and then the Ear, Nose & Throat (ENT) docs to put him on a ventilator and do his sinus surgery. The bronch only takes 15-30 mins, so shortly after we got back into the surgery waiting room they called us back to talk to the doctors. The first thing he said when he walked into the room was "I don't know what you've been doing with that boy, but I am astounded at how good his lungs look!". WINNING!! He said that never in a million years would he have guessed, based on the way his lungs looked a year ago at his last bronch, that he would have no mucus and big, clear, open airways. The tracheomalacia that we've been dealing with since birth has mostly gone away, and the crazy abnormalities that they've never seen before (coming from a man whose done over 40,000 bronchoscopies) were starting to wide. He said they still look weird, but whatever their shape, they seem to be working for him just fine. This was such awesome news for us to hear. We're managing to keep him healthy! They did "rinse" his lungs so that they could get a good sample to test for bacteria. While we haven't cultured pseudomonas for over 6mo, I'm prepared to hear that he's got it again. I'm starting to believe that it doesn't ever really go away, but more is kept at bay for significant periods of time by the IV antibiotics we use. Either way, as long as its not causing problems for him, I'm okay with it.
So we went back to surgery waiting room and about an hour later got called back into the consult room to talk to the ENT doctor. He said that he had removed a significant number of polyps from his nose, and then cleared out his sinuses which were compacted with puss and mucus. I have pictures of all of this, but I'll spare you. He said this is something that Drew will have to have done on a pretty regular basis, based on the significance of his sinus disease. We're hoping that the drug that will cure him of his CF will remove all of the funk thats clogging his sinuses and we won't have to go through this every year. I guess we'll see.
After we talked to the doc we got to go back and see Drew. That poor thing was so out of it and in so much pain I was sure they were going to keep us overnight. It was already 5:00 at this point and I just didn't see him overcoming this in enough time to get home for the night. He needed a little oxygen which he was waking up, but some tylenol and mommy's shoulder helped to calm him down. He just had a glazed look about him. He didn't know who we were or where he was. He could hardly open his eyes. We got him to take a few sips of juice but he was just so out of it. He fell asleep for about a hour and when he woke up he was breathing a lot better. He still wasn't with it at all, but since his vitals all looked good and his pain seemed to be managed, they said we could go if we felt comfortable. So we brought him home! He laid on my lap from about 7-10pm, then earned himself a place in bed next to me. He pretty much slept all night long, not needing tylenol again. At about 7:45, he woke up, asked for dada, and walked himself downstairs. He played, ate breakfast, did all of his breathing treatments and hasn't looked back. We gave him a little tylenol late this morning when he seemed a little bit uncomfortable again. Outside of a gunky, bloody nose that leaks from time to time and a slightly swollen face, he seems fine. Little kids are remarkable in how resilient they are.
Thanks to everyone for the thoughts, prayers and well wishes. Hopefully in just a few days when the wounds heal, Drew will be able to smell again and his appetite will return and he will be good as new! And if you want to make a donation to the cause, you can click on THIS LINK. The sooner a cure is found, the better his chances are of not having to go through this again!
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