From Mike: Day +14 (Day 8 in ICU)

Update 4:53pm
Well the tube will stay in today, but it's not because Dawn's not ready for it to come out. She's currently doing a T-bar test and passing great. A T-bar test is where they remove the tubes coming to/from the ventilator and replace it with a tube with just an oxygen mist. She does all the work to breath and the only help she gets is increased oxygen. Her vitals remained the same on the T-bar, in fact she's nodding off which means she's not having to work hard to breathe. It should actually be a little easier to breathe without the tube because right now it's like breathing through a straw. They could pull the tube now but it's late in the day, shift change is approaching and it's not the best time in case there are any problems. So they're going to let her stay on the ventilator overnight, get some rest, and do it tomorrow morning. Sounds like what I said last night huh?

In the photo below, the ventilator is the machine with the number "10" on it. The monitor says "stand-by." That's because if you follow the blue tube from her mouth, you'll notice it doesn't go to the ventilator. She's breathing on her own.

T-bar test - passed

Update: Noon
One of the CA's that works here in ICU showed some people this blog over the weekend. She says she got 8 people to join the registry. If those people are reading this - THANK YOU! Dawn was very moved. I wish we knew how many people have been inspired to join because of her. If you've joined or know people that have, please share in the comments.

The thoracentesis went well. They took out just under 1 liter from her right side. (see below) She had some pain afterwards that's been slowly getting better. They changed the ventilator to breathe for her to help her rest a bit before they do the breathing test. I think they're still on track to remove the tube today. They just did an x-ray to make sure everything looks ok in her chest. Her swelling has gone down today. They measure her fluid input vs fluid output and she was 1 liter negative today, meaning she output 1 liter more than they gave her.


thoracentesis in progress - pulling fluid


He took out just under 1 liter

Update: 9:26am
Dawn still has the tube in. But before we get to any of that, lets get to the good news! Her white cell count (WBC) is up to .42 from .4 yesterday. A small jump, but the big news is that she now has some neutrophils. Her neutrophil count is 100. She needs to get above 500 to be considered non neutropenic. What this means is that the cord blood is engrafting, and because she has some neutrophils, she's starting to get an immune system. Her liver bilirubin number is also better: 4.6 down from 5.1 yesterday, normal is below 1.

They just did an ultrasound and still see a large amount of fluid around the lungs (pleural effusion). She's breathing great, the ventilator is set to CPAP mode on the lowest setting so she's getting minimal support. I think they could pull the tube now but they want to be sure she's going to succeed. If they have to put the ventilator back in, it could be a days again before she's ready for it to be removed. To help ensure success, they're going to do a theraputic thoracentesis (below). That's where they pull the fluid from around the lungs like they've done a few times before. She's currently getting platelets to help with any bleeding from the procedure.


Thoracentesis