Monday, January 24, 2011
Peyton saw her pulmonary doctor this morning. The doctor heard all the junkiness that we normally hear. However, she said her lungs sound symmetrical and she didn't hear anything in her lungs that indicated that there might be an illness brewing, so that's good. She has added a couple different medications. Actually, one is replacing an existing nebulizer med - it's the same thing only in a higher concentration. The other is an "inhaler" version of a nebulizer med, which will be used most of the time. We'll use the nebulizer version if Peyton's sounding particularly wheezy or worse than normal.
The other day I got a call from the pulmonary nurse practitioner. She let me know about some information they've received on the cultures taken during the bronchoscopy a couple weeks back. On the regular old run of the mill bacteria panel, NOTHING grew out. I thought that was odd considering how she's been so sick so often. On the anaerobic bacteria panel, there was a small amount of growth, along with some yeast. When I spoke with the doctor today, she indicated that this is not surprising considering the fact that she aspirates. Any secretions in her mouth that are aspirated would contain whatever bacteria might be in her mouth. Such bacteria is treated with one of the many many drugs she's had over the past year. She's not putting her on anything at this time though.
The odd thing was this - when the nurse practitioner originally called, I missed the call. I missed the fact we had a voice message, so got the call to call her back a couple days after the fact. When I called her, she was out of the office for a couple more days. So until she returned my call, I didn't know any of these results. Apparently either the morning she called me back or just the day before, all of a sudden some micro-bacteria started to grow from the cultures taken. I guess they were surprised. I assume they thought they were done when the anaerobic stuff started growing out. The nurse let me know that the lab needs to wait on this micro-bacteria to grow out more - perhaps another couple weeks (which would be another week or so from now). They were going to try to identify exactly what it was so that they can figure out how to treat it. The thought it that this *could* give us a clue as to what has been plaguing her for the past year. And when I say *plaguing" her, I truly hope to God that it doesn't come back showing she has the plague!!
So, today when I spoke with the doctor, she brought up this micro-bacteria. They still haven't identified what it is, but the lab has ruled out Tuberculosis!!! Yikes! The thought of Peyton having TB hadn't even crossed my mind! However, I guess this is the sort of bacteria that they are looking at in order to determine what it is Peyton has! I guess if it's a micro-bacteria, the answer isn't going to be an everyday run of the mill bacteria!
She also spoke about how Peyton has a cystic fibrosis *like* environment. She doesn't have CF, but the environment is similar. She said to me that given the "host environment", it is very likely that Peyton will be more prone to these micro-bacteria infections, like CF patients are. She also said that often the micro-bacteria just hangs out there and just *is*. It may or may not respond to treatment.
Once identified, Peyton will be treated. Treatment could be anywhere from three to nine MONTHS in length. It will involve multiple antibiotics. I don't know if they will be IV antibiotics or liquid antibiotics that can go through her feeding tube. I don't know how many will be involved. The idea is that within a few months we'll see how she's responding. If there's no response at all - as in, Peyton's baseline remains where it is - then likely it's not going to respond and they may cease that particular treatment. So, it is possible that even when they start treating Peyton she could still wind up sounding exactly like she does right now.
Outside of that, we had a little more success with Peyton's bi-pap. The night I wrote about her falling asleep with the mask on and the nurse actually being able to hook it up and turn the machine on, she stayed asleep for about an hour and a half. We haven't had it happen since, until nap time today. She got Peyton on the bi-pap and she slept with it running for about 2 hours!! First, hopefully she gets to sleep at a decent time. Second, hopefully she falls asleep with it on again!
That's about all the news for now!