Home

We're home!!  It feels so great! 

We were able to meet with the liver transplant surgeons today at HUP after Owen was discharged from CHOP.  Apparently, over the past couple of days since Owen was admitted at CHOP the hepatologists and cardiologists were going back and forth if it was even worth it to do a liver transplant on Owen.  We weren't aware that they were thinking that his prognosis wasn't good enough to even enlist him for a liver transplant.  When doctors look over Owens medical records and see where his INR, bilirubin, ALT and AST numbers are they think that Owen is really not doing well.  Little do they know how much of a normal baby he is.  Doing exactly what he should be for his age.  Dr. Natarajan and Dr. Loomes wanted the doctors, surgeons that weren't for doing a transplant on Owen to see him.  See how sweet of a little boy he is. Dr. Loomes told Owen to smile at the transplant surgeon.  Steal his heart.  Well, Owen talked the entire time the surgeon was talking to Ian and I.  Now, everyone is on the same page and Owen is offically listed on the transplant list as far as we know.  Dr. Loomes said you can get a call anyday for a liver although, they are going to be super picky with the liver they are going to take for Owen.  We need to have our phones on at all times because when they call and tell us there is a liver for Owen we need to get to CHOP in a couple of hours. We are aware that both a liver transplant and open heart surgery is higher risk for Owen due to the multiple conditions Owen has.  Liver transplants are 90% successful and his heart is fixed with a good long term outlook although with the two things together become very complicated.  The doctors feel Owen could do pretty well being there are no complications with either of his surgeries.  This morning Dr. Natarajan (Owens Cardiologist) came in to see Owen and was happy.  Happy that they were able to convince the transplant doctors that Owen's heart is stable enough to withstand a liver transplant without any heart repairs.  The plan at this point is to get Owen a new liver and after he has a new liver and his INR (clotting numbers) come back to where they should be a little while after the transplant they will then do a full repair.  They told us the normal hospital stay period for a liver transplant is 3-4 weeks, but with Owen we could easily be there longer.  Owen will need to come home on like 8 different medications.  They said that 2 of them are to help his liver and the other 6 are to treat side effects.  He will be on immune suppressant drugs.  To help his body accept the new liver.  I am sure there are many things I am forgetting.  We will update as we think of things we are forgetting or as we have updates. 

Thank you for all of the prayers, e-mails, notes, cookies and flowers.  It means alot to Ian and I knowing so many care and are praying for our little guy!!