Thursday, June 10, 2010

Good Pulmonology Visit

Emily and Braylon had an appointment with their pulmonologist today, and WOW, what an appointment it was!

All the way to Louisville, both kids were angels, singing and playing games as we rode along. Emily would sing, "5 little monkeys jumping on the bed" while Braylon followed with "Monkey bed." Then Emily would laugh and say "macaroni" to hear Braylon repeat it back, then they would both laugh. Then they followed up with "spaghetti" and "bird" and anything else Emily could think of. Then they would go back to singing. It was pretty funny watching the kids have so much fun at just saying words back and forth.

But the moment Braylon realized we were at a doctor's office (which occurred as we were walking in the front door), he switched gears into screaming, crying, shrieking, temper tantrum Braylon. He screamed the entire time we were at the appointment, kicking, hitting, throwing himself on the floor, and with his shrill voice...let's just say my ears hurt! *sigh* He's my kid, and I love him, but I hate when he does this, and I was powerless to calm him. He really dislikes doctors that much, and I had a very hard time communicating with the doctor while trying to sooth the Bray-man. Next time, I need to bring some backup with me to help in handling him at least while the doctor sees Emily.

The appointment itself went well, except for all the Braylon fits. Braylon got checked out first with hopes that he would calm down once it was over, but no, it couldn't be that easy! LOL. The poor doctor was such a trooper though! Anyway, Braylon had a good check-up and doesn't have to return until October.

Emily started off by doing PFT's, then she was checked out by the doctor. Her PFT was the best it has ever been, a shocking 91%. The doctor feels that the oxygen is helping her finally grow some healthy lung tissue instead of scarred damaged lung tissue and also helping to prevent further vascular remodeling. So for now, he encourages us not to be in any hurry to wean her oxygen. That is fine with Emily, and certainly fine with us if it means that it is going to help her lungs grow healthier.

Her lungs sounded good, and as she has been doing fairly well lung-wise the past few months, we set to discussing her other recent issues and the things we need to get done. The doctor asked many questions about her recent liver scare. Her liver has since returned to normal, and her weight is more stable also. We are still assuming the liver thing was related to medication, although the doctor kept asking about what they thought caused her swelling and if they had looked for infectious causes. I assume they did; I know they did at least do blood cultures, but to be honest, I took her pediatrician's word for it that she "tested for everything."

At any rate, Emily will be having a bronchoscopy July 2. It was scheduled for last month, but with the liver issues, we postponed. Now, it has come up again as something we need to do. The doctor will be looking for signs of bleeding as the last bronch showed a high number of hemosiderin laden macrophages. This will be done to rule out pulmonary hemmorhage. The doctor is also going to wash out any trapped mucus and culture it to make sure there aren't any bad bugs growing in her lungs. Fingers crossed that all goes well!


  1. Thinking of you and Emily this week. Best of the best on the Bronchoscopy and I'm so thrilled to hear that the O2 is helping. I told Dr. Kurland that my preference is not to go crazy w/ meds and/or chemo but to take the slow steady route of oxygen therapy. If there's something else they want to do, they are going to have to prove to me why we need it.

  2. Thanks for the support Stefanie. Good luck with Dr. Kurland and the trip. Keep us posted!