An Icky Bug and Antibodies Return

Despite my constant disinfecting, living in a bubble and being over cautious.. Owen caught a bug.  I have had this constant draining and feeling tired for about a week, now Owen has it, but worse.  Ugh.  I hate that he always gets the worst of it.  He started with a low grade fever early Sunday morning, and he sounded awful, like a sick grizzly bear snoring.  All day Sunday and then today, he has had off and on again low grade fevers.  Lots of congestion, almost like drowning in mucus.  It's yuck. 

I called his transplant team at Stanford because you can't go on bypass if you are sick and so that can obviously affect them accepting a heart offer.  Our NP suggested we get him in for his IVIG earlier in the week {we were originally scheduled for Thur}.  Since we have a direct admit to the CVICU, we might as well swab him so we have an exact diagnosis and we can also do a chest xray to ensure he's not developing pneumonia or something more serious. 

I then called our local transplant NP and relayed the info, but she said they are on a bed crunch since so many kiddos are sick.  It does sound like RSV, but so far he's handling it well.  His sats are dropping into the mid 60s {not good}, but I am staying on top of the little noses to keep him clear so his oxygen is effective. 

We'll see what unfolds the next few days. 

As far as the antibodies... there is a specific antigen that continues to pop up on Owen's PRE-IVIG labs.  Each month we do an IVIG treatment and we draw pre-labs.  Then we run the 12 hour infusion and draw post-labs.  Both are tested and each month the A20 antigen continually pops up PRE-IVIG, and then disappears POST-IVIG.  So the IVIG is effective in knocking it out, but since it continually pops back up month after month, we need to make sure the donor doesn't carry that specific antigen and that there is a negative cross match with the donor.  So to be on the safe side, since time is on our side right now, we added that as an VOID on his UNOS listing.  So his highly sensitized antibodies are at about 24%.  All that means is that out of the donor population, there are 24% that carry that specific antigen, so we would not be able to accept that heart.  It's definitely a setback and could cause his wait time to increase, but it could be worse. 

Now we just need to knock this virus out and pray that it doesn't get worse.