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Friday, November 30, 2012

Thursday & Friday
Nov 29th & 30th

When I went to see Noa on Thursday, there was the tiniest bit of pee in her catheter! It wasn't anything official, but it was enough to lift my heaviness and give some hope. Medically, there are stages that define someone regaining kidney function...and this wouldn't even qualify as the first stage, but it was so good to see. I had been having such a hard time pushing past the intensity of this time line. Something has got to give soon and the pressure of that is so intense. So many variables. So we just decided too let go and live in the hope. We went to the toy store and bought Emmaus some cars and Ruby a set of bugs in resin, a couple videos and finished with ice cream topped with sprinkles. 
Celebrating the sprinkles!

I went to see her before bed, she looked great. Her bedside nurse propped her up on her side a bit. It was sweet because I don't think I'd ever seen the back of her head before! And its so nice to get her in different positions. They continue to elevate the leg with the dialysis catheter. It helps keep it from getting too swollen.

Other than that, Noa is continuing to improve and regain some ground after the circuit change on Monday. When I visited her this evening, they had her oxygen back to 'room air' settings and they had discontinued her dopamine (a blood pressure med). They have been trying to keep Noa 'fluid positive' on the dialysis machine (it is one component in challenging her kidneys to function), but today it appeared that her lungs had taken on some fluid as well, so they kept her 'even' today. There is a balance to trying to get her kidneys to function. They will allow her to become incredibly puffy and put on a lot of fluid, but not to the point of compromising her lungs. 


Today, her lungs had improved and the doctors agreed to allow a more 'positive' fluid level. When I left her this evening, there still had been no urine. But...they said it could take up to 2 weeks to see anything. I am getting use to seeing her swollen. Its pretty sad though. She hasn't opened her eyes in over a week. You can see the lids sort of move as if she would like to open them, but they are too swollen. I pray her vision is ok. I just read on a website that other babies her age are starting to focus further away and track an object across the room.

Noa has been doing very well in all other areas. Her gases continue to improve, and it seems like she tolerates her 'cares' (being suctioned, cleaned up, examined, etc) without needing any extra sedation. Today she is officially off of her antibiotics and she continues to be slowly weened off of her steroid. She is just finishing day 3 of blood thinners for the clot in her chest. They will continue with that for another 4 days. Noa also started on a little physical therapy today for her hands. Her thumbs tuck in her fist and she clenches it tight, so they put tiny splints on her hands to hold her thumb back. The therapist worked on opening her hand/straightening her fingers up a bit. This is just the beginning....her little body will need alot of assistance moving around when this is all done.

Although I hadn't heard it earlier in the day, the dialysis nurse told me she thought they were planning on doing a circuit (dialysis machine) change tomorrow (Saturday). Of coarse I knew the day was coming but I am nervous. My mind starts racing and I want to control things but can't. I suddenly loose confidence in all the staff because of the ongoing issues Noa encounters with each change and their inability to prevent it or even know why it happens exactly. Its like we're just crossing our fingers and hoping it goes smooth. 

If we really do have a circuit change tomorrow...I will be covered by God's feathers, tucked away under his wing.

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