Followup on Transplant Eval

I have just a quick update from my post yesterday. 

I called this morning and spoke with the NP at LPCH today and we chatted for a bit.  I just requested that she speak with Dr Rosenthal and decide whether the liver ultrasound and CT scan (cardiac mapping) were definitely necessary, and if so, could they be done locally.  I know they need the data prior to making an education decision to determine transplant eligibility, so if the tests need done I have no issue getting them done. 

She totally understood my side of things and spoke with Dr Rosenthal for me.  She called back a bit ago and said it's fine to have the liver ultrasound, CT scan and the rest of the labs done at PCH.  They have very specific data they want when these tests are performed and is writing a long letter to Dr Stock to ensure it gets done correctly.  The last thing I want is to subject him to radiation to get the wrong data. 

I emailed Dr Stock to give him a heads up of what's going on.  I know he'll take care of the cardiac CT scan and I hope to get that done next week.  I know that they do not intubate at LPCH during a cardiac CT, but rather just do a sedation process, so I will ensure that is the case at PCH.  To say I'm nervous about having any procedure done here is an understatement.  The liver ultrasound will be a walk in the park, but it's more of a GI issue, so I am waiting to find out if Dr M (GI) needs to be the one to order that.  Then we have the issue of labs.  I have a LPCH lab slip, but it needs to be rewritten so I can get labs locally and have them sent to the correct person. 

Whew. 

It looks like we have a busy couple weeks ahead of us!  Kam has dance recital this week, including dress rehearsals all day Friday. It's going to be fun, but busy.  She is in all three recitals and has several costume changes and performances at each.  I'm so glad we dropped ballet, that's one less stress.

I should get Owen's antibody results next week and I'm excited to hear the number.  PRA (panel reactive antibodies) are a huge issue when talking transplant because the higher the number of antibody sensitization, the harder it is to find a heart.  In 2008, when he was first tested, his PRA's were at 98.  So 2% of the donor hearts available would work.  In 2009, he dropped to 95%.   In 2010, he dropped to 88%.  In 2011, he dropped to 75%.  So as of July 2011, he could have accepted a heart from 25% of the donor pool.  Donor pool means children, no more than double his size, with the same blood type.. 25% of those donors.  It's all a little scary and stressful, but I am trying to just take things as they come. 

Starting with Liver ultrasounds, labs and cardiac CT scans.  Hopefully all will be fine and he will be a candidate for transplant.  I won't go into the ten minute conversation we had about what happens if he is NOT a candidate for transplant.  I heard palliative care and zoned out, because I just wouldn't be able to accept that as an option!