Peyton is back home from her endoscopy and bronchoscopy!
We arrived at MUSC for 7:00 this morning. We got her checked in and into the holding area before going back for the procedures. Both the pulmonary doctor and gastroenterologist came to speak to me before the procedures just to explain what they'd be doing and what they would be looking for. I was able to go back into the procedure area with Peyton while the anesthesiologist got Peyton settled in with a nice dose of propofol. She was asleep very quickly and then I headed back out to the waiting room.
The procedures didn't take too long. The pulmonologist came out first to sit down and discuss her findings with me. Mid-way through, Ron showed up - he had to bring Moira to school, so came back when that was done. Essentially, what she found was that Peyton has the same white, frothy secretions we find in her mouth and back of her throat all the way down her airway and into her lungs. She said there were yellowish secretions towards the bottom on the right side. So, it's evident that she is still aspirating, which is not good. She suctioned out as much as she could. The difficult thing is that it just comes back - you can suction all you want, but it comes back. She was able to take some cultures so she could have them tested for various strains of bacteria. Up until now, we've had the regular nasal cultures done in the hospital and any antibiotics she's been on have either failed or took forever to even work, indicating whatever she's got is just outside the realm of the drugs' capability. We're trying to troubleshoot and it's like taking a shot in the dark. Hopefully the cultures taken today will provide a much better clue as to what she's got going on so that the doctors can know best how to treat the illness.
From a pulmonary point of view, it's not good to be aspirating. It could cause aspiration pneumonia, which has the potential to be devastating. So, what can they do?? Nothing. Without going to the extreme surgical measures I discussed a couple months back, there's really nothing we can do except try to get on top of these illnesses when they happen to try to suppress them before they become too much to handle. If you are new to Peyton's story and haven't read back far enough yet, the surgical options would be either doing a trach, which would allow us to suction her further down; or to do a layringotracheal separation - the airway and esophagus are physically separated and the airway is cut off from the upper throat so ALL breathing is through a trach and there would be NO sounds whatsoever coming out of Peyton's mouth again. Even with just a trach alone she could still aspirate. Anyway, it's difficult knowing that there are possible ways to help (and even those ways are definite!) and that you choose not to go those routes, even when you are making those choices based on what is in her best interest.
Then there was the endoscopy. This was because of the gastric bleeding she's been having. They needed to locate the source of the bleeding. Let me just say that my prayers were for the problem to be found so that it wouldn't be a mystery - either make it obvious and make it be something which is easily repaired OR just let it be nothing....let there be NO sign of anything being on. I have to say we were blessed today. I saw pictures the doctor took. He found NOTHING. No active bleed. No old blood. Not anything bloody. NOTHING!!!!!
Between the two procedures, the only troubling bit was this. Recall that back in August of 2009, Peyton had a nissen fundoplication surgery. This was done at a time when she was violently throwing up all the time. One of the risks of this procedure, an open surgery that left a several inch scar down her belly, is that it can come undone. Well, her nissen is no longer in tact. It is undone. So the question remains, what is to be done about that. She is throwing up, but not to the extent she was throwing up before. However, she IS aspirating. So, if we're faced with the possibility of this surgery it's a real tough call. I know when we saw the surgeon for a check up a few weeks back, he is currently inclined to be as minimally invasive as possible now considering how her overall health has generally declined. It is SO hard to know what to do.
So, it was a good news bad news kind of day. But we are so blessed that the endoscopy revealed NO bleeding. That is a huge relief. The pulmonologist took cultures and we'll hear more about the results in the coming days or week or so. The gastroenterologist took tissue samples, so it'll be a while before we hear anything back on that.
Aside from all of this, Peyton's temperature is back to normal. She's still pretty junky sounding, but is feeling much better than she was the past couple days.
Thank you so much for all your prayers and support!!