Inpatient Again

Sierra is inpatient again.  Tuesday we were walking home from school (a short distance - about a 15 minute slow walk including waiting at lights).  She got out of breath and had to slow down.  At one point she felt dizzy and nauseous.  We made it back to the RMH,  she took it easy and felt better.  Wednesday we had a clinic appointment and the doctors decided it was time to trial her on Milranone.  This is the medication that I thought was not an option.  They explained that sometimes it is an option.  Each patient reacts differently.  Some kids it makes them sicker and some get better.  So, to explain their reasoning better, imagine a window.  On one side of the window is Sierra not feeling well because they have pulled off too much fluid.  On the other side of the window is Sierra not feeling well because she has too much fluid.  This window has slowly been narrowing, if not over lapping at times.  As they try and pull fluid off her with a lot of diuretics, her kidneys say "Ouch."  If she has too much fluid she is tired, short of breath, nauseous and no appetite.  The goal is to get her feeling good, waiting for a heart.

They admitted her to the PICU Wednesday afternoon.  IRONICALLY, it was the exact bed she was admitted to for the first time at LPCH   9 years ago.  They started a PICC line, which she was not crazy about.  They had to do it with 2 attempts and no anesthesia.  She was not happy.  They started the milranone and watched her there for a few hours to make sure she tolerated it alright.  By 11:00 PM that night, she was up on 3 West.  We were very excited that we didn't have to be there longer than we thought.  She has been on the milranone for 2 days now.  Not a lot of difference felt, but they are upping her diuretics to pull off about 4 more lbs of fluid she is holding onto.  They will see how her kidneys tolerate this.  If all goes well, she will stay on the milranone until transplant and, she can be on milranone outpatient at the RMH.  It is a little to early to tell if it is helping yet.

This has been a different heart failure than the past 2 times.  Usually I can guess or call what the doctors will do next.  This one, I feel completely in the dark.  I just can't call this one.  However, I know that if this milranone doesn't work, we have some very dark days ahead of us.  On a lighter note,  HAPPY BIRTHDAY JASON!! I love you and wish we could be home to celebrate with you.  Tonight is the hospital prom, so Gage and I will go together and Sierra will go with her friend Alex from the RMH.  I will post pictures later.