Wednesday 8/28/2013

Ava is having a very good day. I'm going to list a bunch of medical jargon for my own benefit. Her milrinone has been weaned in half and should come off tomorrow. If she doesn't tolerate that wean well, then she will start nitric oxide inhaled through her nasal cannula at 2L. If she doesn't need the nitric then she can downgrade to a regular nasal cannula at 1L, as long as it stays on 100% oxygen. If she has to have nitric- she would be eventually weaned to another med, because patients can't go home on nitric. Ava will probably have 100% oxygen delivered for several months until pulmonary hypertension is resolved. The milrinone is the last med going through her neo-PICC IV line in her neck, so once that is successfully weaned she may be able to have that line pulled. It is just one more thing that could get infected, so it will be nice when it's gone. It is nice to have too....but it's been in for a month. It seems we need to pull it while we are still "ahead.". Ava's BNP today was 260, down from 600-something, so that's good. She will get another BNP lab draw tomorrow to see if the milrinone wean affected it at all. We are currently weaning the clonadine..which was the step-down drug from the presidex that is used in the cardiac ICU. After the clonadine, we will wean the morphine and lastly, the ativan. The NP said that opioids are easier to wean than benzodiazapines which is why ativan will be last. She cited all the women in the 70's and 80's who were addicted to valium. The feeds are still continuous but the NP said she'd start condensing them after the milrinone is weaned. Ava is still really sweaty, and cardiology is wondering if that is just her baseline. She has been sweating just about any tape/dressing off her face and neck.

Ava is having a grand time sucking on her fingers. She crams as many as she can in her mouth at once. The child life specialist brought her little socks that she had sewn/glued little rattles on. She just fell asleep for the first time today while Great-Grandma Van Sickle from Texas is holding her. 

I almost forgot! Ava giggled today! a soft little laugh, over and over. I've never heard her do that. I was giving her a massage on her legs and when I put pressure on part of her thigh she laughed. She didn't look at me though. I enjoyed it, but abandoned it pretty quickly since the therapist told me a long time ago that therapeutic massage should not tickle. I wish she would smile at me. I feel like she is really behind with social cues and I hope she can catch up fast because it will help us bond. 

other fronts:

Shaun is working on ripping out the carpet on our main floor. Respiratory therapy said that is one of the best things we can do for Ava wi her chronic lung disease. We will look at putting down some hardwood since it should match what is already in the bedrooms. 

I went to pre-kindergarten parent orientation today. Their sweet bilingual teacher is 6months pregnant with twins. She plans on returning to work after 6 weeks of leave...She will be soooo tired! I'm excited about their class. There is a lot of diversity in their class, which will be good for the boys. 

Finding joy in the simple things: I'm so happy to have found honey apple baby lotion for Ava. I was really getting sick of the lavender. I probably won't ever be able to use it again because it will just remind me of the NICU. Ava will probably have an aversion to it as well......which means I am probably shooting myself in the foot by using a new lotion I really like.