Tuesday, April 12, 2011

The Start of a New Beginning - Preparing to go Home

We've made some good progress in the last couple days, to the point that I'll cut straight to the point and say that barring any terrible lab results or turns for the worse, Lillian will be coming home this Thursday. In terms of the actual progress we've made: Lillian's DR17 levels have dropped to 44, an improvement from the 57 they were at late last week. That number is still higher than we like, but with the trend in the right direction (the first time she tested positive for the antibodies to the DR17 antigen she was at 68, then she dropped to 57 last week and 44 yesterday). Hopefully that number will continue to drop, but right now it is enough for us to begin the discharge process.

Besides the HLA antibody tests, Lillian also gets two rejections scores (they use 2 different methodologies to generate the scores, hence how they can be different) via electrocardiogram. These scores (I have no context for them besides the numbers) were 2 and 4 last time she had an ECHO, but the results we got today from the ECHO yesterday were 2 and 2, so another improvement in that regard.

In terms of the actual discharge process: right now, Kathryn is beginning her 48 hour stay with Lillian. This is basically a change for the hospital to test us with having Lillian's care transferred to us. This policy is good, as it's been over 5 months since we were solely responsible for Lillian's care. We're also going to be running extensive blood tests tomorrow to test her Valganciclovir (anti viral targeting the CMV virus so far contained within the heart), as well as getting another HLA antibody sometime over the next days. She will have lab draws on Thursday, after which we will pull her thigh PICC line. It's going to be weird seeing that go, as that line has been in since October 24th, 2010. Stable and reliable for use.

On the homeward stretch now! Hopefully this one sticks a little bit more than the last one.


  1. Many, many prayers coming your way for discharge this week. How amazing is that? I am so happy for all of you! Brand new heart...brand new start. Way to go little lady!

  2. Glad to hear the progress. Our little Paige has hypo-plastic left heart. She had the Fontan procedure (3 surgeries)several years back. She is an active 16 year old and loving life. These precious kiddos are complete miracles. So very happy for your family to have Lillian coming home.
    The Brandt's