Day +22 October 14

I am exhausted today and need sleep.  I will post a quick update.  Elle is doing well in the aspects discussed before, but the liver ultrasound does show reversal of flow in her liver vessels and the liver is very enlarged along with the high bilirubins.  We are told she has VOD (veno occlusive disease or sinusoidal occlusive syndrome or SOS)  it means her liver is very sick and has micro clots in the small vessels in the liver.  It was caused by the Busulfan most likely (chemo she got a month ago).  She cannot get the only treatment available because of the bleeding in her lungs two weeks ago.  Defibrotide can cause bleed.  So we just "support her through it" and let her heal on her own.  85% of people with VOD recover says Dr. Miller, the BMT doc on service.

Also, she has a yeast found from blood cultures from her arterial line.  This is not good either.  The fungi usually form a film that loves to stick to plastic and the only way to get rid of it on an IV or any other line is to replace the line.  She has four lines and they were all very difficult to place and did damage her skin in the process.  She can't have them all replaced.  The antifungals are hard on the kidneys which are already failing.

But despite all of the worry this is causing us, we are constantly reminded that she actually appears good and does not act like the new liver and infection issues are making her sicker.  Her wounds in fact, are looking pretty good and she had no more bleeding today.

On the lighter side, after all day concerns with Elle and being in the hospital all day, we got free tickets to the Minnesota Wild hockey game from RMH.  FUN.  I am not much of a sports fan generally, but I guess I really love hockey... and they won.  I couldn't stay for the whole game though as I didn't want to leave Elle long.  She is resting well currently.

Some of the Edlings were there too! Keira and Chloe

Holding hands

Keira was a little camera shy -Chloe won't look right at the camera either sometimes