Confounding Variables

Someone used the term "confounding variables" the other day to describe Ava's medical situation. She might have an underlying mitochondrial disease, but clinically she looks like failure to thrive. She is having a hard time coming off the vent, but is this because of progression of disease, or is there a "confounding variable" that is causing this, such as weakness due to under nourishment? Her lactate has been elevated- again, is this disease progression or the result of her muscles breaking down because they are starved for food?

We walked in today to a baby that looked a little better, seemed to be little stronger, and did well on her morning CPAP trial. We then found out that her lactate from her overnight blood draw was 11.6 (the highest we've seen). How does one process that information? The attending came in to talk to us a short time later and stated that she was suspicious of the way the draw was done and wanted to re-stick her. I thought to myself "have a good time with that, but it's still not going to be any lower than 8 or 9". Imagine my surprise at the actual number: 5.8!! This is one of the lowest numbers we have seen in a while (although still elevated above normal). The attending is also concerned about her weight, which is down a little from the last time she was weighed on Monday. Is this because all of her energy is going toward learning to breathe again, or because of the fluid she got rid of when they gave her lasix? Or could it be related to being weighed on a different scale? Questions like this are going to drive us out of our minds! In any case they are going to increase the calorie content of her feeds. not sure if they will continue the CPAP trials or give her a break. All of it is very confounding, to say the least.

On the home front, Alexa was up last night coughing at about 4:45. So into the bathroom with Daddy she went to turn on the steam. Emily seems to be doing a lot better, but complaining about her ear hurting. Our pediatrician, who has been calling daily to check on Ava, called a little bit ago- I told him about Emily's suspect ear infection and he is going to call in a prescription for us, knowing that we don't really have the time or capacity to take her in for an appointment right now. These are the little things that get us through right now.

So we continue to walk down a path with an uncertain destination, trying to make sense of every twist and turn. I trust that God will continue to give us enough light for our next step. But my humanity keeps taking over and I keep wondering why he won't just give us a 5000 watt search light. But if we knew where we were going would we continue to walk? To even think about it is terrifying...

That's all for now...
Allan