The D Word

So the yang has been going well. After my talk with Dr J, I decided to just release all my expectations and go with the flow. I was ready for however long we needed to be here and do whatever the docs say we needed to. The second you give something up, it seems to come to you...

You know when doctors start throwing out the word "discharge", you have about a week or so left barring any unforeseen things. They started talking about it on Monday, so keep your fingers crossed.

It has been a big few days for Molly and mostly all for the good. We got an awesome new attending physician in the PICU who moves fast. His first mission was to get Molly off the Milrinone and her central line out asap. Yesterday cardiology came by to say they were going to slowly wean her off the milrinone and possibly she'd be off by Friday. 10 minutes later I'm in rounds and Dr Willson (my fav new attending) is directing them to stop it immediately and pull the central line. I thought cards changed their mind, but when I mentioned it later, they were surprised (but fine with it). Yay! Dr Willson came by later to remove her central line, thus making Molly wireless once more. He said his reasons for the quick move was risk of infection. He said they had a kid the day before who was supposed to get their line out the next day and got an infection. Now they are stuck here for 2 more weeks on antibiotics.

The EP has been in the do some tweaking on Molly's pacer. We've been noticing that sometimes her heart rate suddenly drops to the 100s for no reason. When he did the check he saw that her atrial lead (the one that senses her atrial rate to tell the ventricle what to pace at) was picking up some reverberations from the ventricles pace and trying to pace that. So the machine was switching modes and doing this drop thing. It doesn't hurt her in any way, but they want to tweak it so it doesn't happen. Yesterday they made the lead less sensitive and she's had way less spells of this. Again, these pacers are made for old people, so retrofitting them to work for a baby takes time and adjustments.

So Molly is off all her iv meds and back on all her oral meds (with a few more added for bonus). We've officially crossed over into only being here for feeding. She is still not eating the volume that they need her to eat in order to get all she needs. Cardiology said they would be fine sending us home with an ng tube (feeding tube) so we can supplement whatever she doesn't take by mouth. We're fine with that too because she needs the nutrition. However, Dr Willson (in another awesome move) let us pull the feeding tube to see how she would fly on her own. It's been 24 hours and Molly is eating well. At home she ate about 375 ml a day. They want her to eat 560 ml a day. In the last 24 hours she ate 475. HUGE improvement after just one day. So we're working with speech therapy (yes, they actually work on feeding issues with babies) to help her get more. Working through some reflux issues and today trying to add some rice cereal to the bottle. Apparently adding some rice cereal allows their stomach to empty quicker. They have labelled Molly "quick to satiety" meaning she eats and once she feels the food in her stomach, she's done eating. We're hoping the rice cereal empties her stomach a bit more so she has more appetite. Thank freaking god we have specialists helping us.

Otherwise Marie and Hannah are back! And so is Brian!

So once Molly perfects to F word, we'll be D worded. If she just doesn't get there, a feeding tube it is. Whatever needs to happen to get us back home!