Outside of "Normal"

Monday, November 24, morning

Faith's headband is looser today... so we have a new way of measuring how swollen she is. She is still swollen though, which like I said last night is kind of the root of all of the other issues she has, and the reason they're having such a hard time getting her off the ventilator. She's resting really well though, so well that she's actually barely breathing over the vent, so they're going to lower her Fentanyl again.

I asked the surgeon today what the normal range of time is for the swelling to go down; he said she is already beyond what is considered normal, and they would have expected it to have gone down by now. He explained that the fluid is due to an inflammatory response in her body from the surgery, and the inflammation has made her capillaries leaky, so instead of the fluid draining through her veins like it's supposed to, it has leaked out into her tissues. They are giving her more Albumin to try and get it back into her blood vessels to drain out of her body, and they are going to come later today to do a tap, at least on her right side but maybe on both (her right side is worse on the x-rays) to drain out some of the excess fluid.

Faith's potassium was low this morning, so they have been giving her some to balance those levels out. It is such a game of balancing things, making sure she has what she needs, without giving her too many fluids, because they don't want her to have more reason to swell... they've cut her TPN (nutrition) way back (in fact I'm not sure she's getting any right now with the potassium going).

A nurse came by earlier and asked if I'd be willing to have Faith participate in a study they're doing on some new pulse ox probes (the little thing with the red light that tells her oxygen saturation in her blood), and since it's non-invasive and they can only do it on babies with an arterial line in, which Faith just happens to have again since yesterday, I said yes. I participated in another study, too, when I went in for my amnio at 37 weeks- they were studying whether certain measurements at the ends of some of the bones in her arms and legs correlate to the results of the amnio in terms of lung maturity, with the point being that if they can figure out the correlation, they wouldn't actually have to do amnio's anymore, they could just do an ultrasound and measure those parts of the bones, and get the same results they get from the much more invasive amnio.

I think it's kind of cool to be involved in different studies to advance the way they do things, and learn more about certain things... if there was ever a lupus study that I qualified for, I'd probably consider it, and if anyone ever contacted us doing a study about what causes gastroschisis, I'd DEFINITELY be interested, especially since we really don't fit the demographics of what they know for who usually has it (young moms, moms who do drugs, etc), and because of my lupus and the possibility of finding some kind of weird link between the two.

Anyway, that's what's been up today so far... Dave left early this morning to go back to work, and won't be back till Thursday... he did get to hold Faith though for awhile this morning before he had to leave, so I am sure that made his day, even though it meant getting up earlier.

I will update more probably after they come to do the tap.