On the drive on Sunday, we had a call from the Geneticist Peyton saw up in Boston. He's apparently been doing a lot of homework on Peyton since we left, and he had some information for us. He was wanting to send an email with a couple lab requisition forms attached. Peyton needs some labwork done. We'd banked her DNA in Boston, so there is actually one test he wanted to have done which he already has her blood for. He will handle that. She needs to have some additional bloodwork and a urinalysis. He would also like for her to have an abdominal ultrasound. One of her issues is that her heart is situated more centrally than normal. The doctor is wanting to know how the rest of her internal organs are situated. Also, he is wanting to take a look at some additional medical records - mainly ophthalmology and audiology. I took some time yesterday to scan and email to him all the ophthalmology records that I have on hand. I need to send the audiology records now.
There is a potential diagnosis this doctor has in mind. I hesitate to say what the diagnosis is just now because it's a theory. And it's NOT a diagnosis. Not yet. Perhaps not ever. I don't want to raise hopes or have people looking up information on something that may not necessarily be yet. We've been down this road before with "potentials" that didn't wind up being what she has. But to give some information, the one this doctor is looking into has something to do with a brain/eye/muscle disorder. Ron and I have already read up a little on this disorder and it does sound very familiar. However, there are parts that don't sound so much like Peyton. So, now we need to look into how to get these other tests done and results sent up to Boston.
Peyton is getting kind of junky sounding again today. She is still on the IV antibiotics for a little longer, but she should be getting better. The pulmonary doctor here is going to do a bronchoscopy. It may take place on Friday. There was the thought that we'd get cardiology to do the heart cath during the same procedure so she wouldn't have to be sedated twice. However, the pulmonologist doesn't know that that is such a good idea right now when she's not 100%. We'll see what happens. Either way, she will be having the bronchoscopy this week.
Moira started back to school on Monday. Not much rest between getting home from Boston and her going back!! She's in third grade and is pretty excited about it. It's a little different this year for her. She has two teachers. Each teacher teaches a few of the subjects - the kids spend the morning in one classroom with one teacher and then in the afternoon they move across the hall to the other teacher. Her afternoon teacher is the same teacher she had for first grade, so she is extremely excited about that.
Between loads of laundry, I'm trying to rest a bit. I was exhausted before this trip. A week of no nursing help took a toll on us! We'll be moving in a few weeks, so that'll be fun! I'll be sure to book plenty of nursing hours around the move!!
I'll keep you posted on how Peyton's procedure goes later in the week! If you want "less clinical" updates on our trip to Boston, I've been posting some daily recaps on my blog http://fontenblog.blogspot.com
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