Tuesday, October 13, 2015

14 Months Old!

Aberdeen is 14 months old toda...errr...this past Saturday. I have been terrible about keeping up
with these updates, for which I apologize. Truth be told, this move has been hard for me, and in trying to regain my balance, I've let some things fall by the wayside. I completely failed to send out thank yous for Aberdeen's birthday, which is inexcusable, and I continually forget to update y'all on our goings-on. I hope to fall into a groove sooner rather than later, but until then, please excuse my slacking.

We have taken Aberdeen to a lot of medical appointments in the last three weeks. Seriously, like, at least 20. We ran into some issues shortly before moving out here with the way we'd organized her care, but everything has worked out satisfactorily. We are seeing most of her specialists in San Antonio, but because she requires special anesthesia that is not administered by all anesthesiologists at all facilities, anything sedated/surgical will need to be done at Texas Children's Hospital in Houston, approximately 3 hours away. Because of this, we are seeing cardiologists in both San Antonio and Houston (we still needed a local contact to follow Abby between Houston visits), and will be making the trek out to TCH for all craniofacial/neurosurg appointments. So far I am pleased with the providers we've met - which I think is just about all of them - and we've gotten hooked into a great facility for Abby's therapies. 

Aberdeen has made this transition much more smoothly than I, and seems to be doing well overall. Unfortunately her echocardiograms suggest otherwise. The measure of obstruction of her left ventricular outflow is called a gradient. Aberdeen's gradient was approximately 80 when we left the hospital last January. In August, it was sitting around 100. As of last week, it is now at 140. This is not good. Our local cardiologist said that if he had his druthers, we would be moving toward surgical intervention in a matter of weeks, and would certainly have something done by the end of the year. The cardiomyopathy teams at both TCH and Cincinnati think we still need to wait. They agree that the number is concerning, but because she isn't showing clinical signs of being in distress or heart failure, it's important to get as much size on her as possible before going forward with another open heart surgery. This operation (septal myectomy) would involve the surgeon entering the heart through the aortic valve in order to remove the overgrowth of muscle from the ventricular septum. Right now, her aortic valve is very small because she is very small. The bigger she gets, the better the chances that this surgery will be effective. Right now, we're thinking this will probably have to happen in the Spring. Until then, we will continue with what we've been doing (meds, CPAP, etc), while being very mindful of Aberdeen's breathing and behavior. Our local cardiologist, being the more nervous of our team, will be following her on a monthly basis - which I don't mind at all. I'm glad the cardiomyopathy group is comfortable with watching and waiting, but I don't mind having someone breathing down their necks at the same time.

This first image shows the difference between a normal heart and one with hypertrophic cardiomyopathy - you can see how much thicker the muscle in the center of the heart is.

This next image is the difference between a heart with non-obstructive septal hypertrophy and one (like Abby's) with obstructive hypertrophy (aorta - aka red tube at the top of the heart - is blocked). If blood can't effectively leave the heart due to obstruction, it eventually backs up into the lungs, which is bad.

As far as all of her other specialties go, we're pretty much in maintenance mode. Most things are going pretty smoothly, and anything that may require addressing (i.e. neurosurg) is taking a back seat to cardiological concerns. 

At home, Aberdeen is really doing well. She has more room in this house to roll around, and had definitely started using it as a means of transportation. She has started babbling up a storm - she went from having no consonants to having at least 4 in about a month's time. She is even saying mama! It doesn't always seem to be in reference to me, but I'll take it! We're working on her transitions between laying down and sitting, and are working toward getting her standing without our help as well. We've been doing lots of hanging out with our friends and family here in Texas, and Abby has been very patient as we continue to get the house in working order. 

To sum up: we are very concerned about Aberdeen's heart, but happy with how she's behaving overall, I am stressed about pretty much all the things, Jameson is settling into his new job nicely, and the dogs are just happy the couches are back. :)

For your enjoyment, some pictures of the progress on the house...