A Lil' Boy's Journey to Live….


I spoke to CHOP yesterday regarding Riley’s blood test last week.  Some of the antibody levels came down on their own.  They are not where they need to be for transplant so this is the plan…… CHOP went into Riley’s profile in the Organ Donor Sharing Network and took the antibodies he has out.  The hope being that it will bring more offers that maybe we weren’t getting because of the antibodies.  When an offer comes in…if the donor has the antibodies we will, at that time, go to CHOP and do a Plasmapheresis.  That will clean his blood of the antibodies.  After that he will go in for transplant!  CHOP has never done a Plasmapheresis right before transplant, but with Riley there are alot of things that are different!  Of course I asked if there was risk doing it before transplant, and I was told ANYTHING they do with Riley is risky!  So that’s the plan, right now, as far as the Plasmapheresis goes!

I also spoke to Pulmonary about what the doc told me last wk about the 3-6 months.  They were NOT happy that it was said!  I never really got answer as to if they agree or not, but throwing out numbers like that is not something they like to do.  Dr. Hanna, Riley’s Cardiac Transplant doc, will be back from vaca next week and I will talk to him!  First about what the other doc said, and then about what’s next!  We have nothing scheduled right now!  We are just waiting for the pager to go off!!  SUCKS!  If we are not going to do a Cath, though, we need to do something even if its more frequent echoes.  They aren’t very reliable, but they have to be better then nothing!

The next phase of waiting could possibly be getting admitted to CHOP.  Most children waiting for a heart are inpatient, but Riley has had an exemption to stay home.  Hopefully we will get an offer before the day comes when Riley has to wait in the hospital!

Also…..I asked what would happen if Riley had NO veins left.  I knew the answer, but wanted to check.  Riley would be put on ECMO.  ECMO is bypass, and not a long term answer, but it’s one last hope before nothing!  If he is on ECMO to long, though, his other organs will start to fail, and we’ll have to make a decision that I hope we NEVER have to make!  They did discuss apparently at length on Monday, though, that they would do whatever was necessary to keep one vein open.  Even if it meant ballooning it every other day!  I guess at that point the risk for the Cath goes out the window!  Hopefully, though, like ECMO we will not get to that point!!

Sooo……..we wait…..pray!!!

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