Thursday, April 23
One month ago tonight, I took Faith (and way too much stuff!) and got on a plane from Denver to Boston. I was afraid, but I knew I was doing the right thing, and I was excited to get her on Omegaven and start things moving in the right direction. One month ago tomorrow, Faith was started on Omegaven.
Faith had her weekly labs drawn today after her CAIR clinic appointment. Dr. Puder is out of town, so I figured I would probably call Danielle or Alexis tomorrow and ask about them. A little while ago, my phone rang and it was a number I didn't recognize. I answered, and it was Dr. Puder, calling to talk about Faith's labs (have I mentioned lately how much I love him?).
He started off by telling me that her white blood cell count is normal, her hematocrit went from 25 last week to 30 this week (yay iron!), her platelets went way up (a good thing), her triglycerides are normal, and her CRP (an indicator of inflammation/infection) is normal. Then he said, "Her bilirubins are at a level where you can go home." At that point, I went into shock mode, I was stunned! Her total bilirubin, which last week was 7.1, this week is 3.5! And her direct bilirubin (4.6 last week) is 2.0!!! NORMAL levels for bilirubin is anywhere from 0.3-1.2 for total, and 0.0-0.4 for direct, so we have a little bit to go to be able to say she's in a normal range (she's actually NEVER been in the normal range in her whole life), but 2.0 is AWESOME!
Other good news from today- she doesn't need her blood pressure meds anymore, she gets to nurse 5 times a day now, and we are going to start increasing her feeds by 2 mL every other day.
I am SO thankful that we have not had to go down the transplant road! I can't wait to get back to Colorado and show her to the doctors who thought we should take her to Pittsburgh to be put on the transplant list! And I can't wait for all of her nurses at the hospital in Denver to see how great she is doing now!
I really AM going to get some pictures posted tonight!
5 weeks ago