RSV

Owen has been feeling super crummy since Sunday at about 2am.  He has had low grade fevers, lots of congestion, low sats {mid 60s}, and lots of coughing.   He is up at night feeling awful.  Crabby.  Tired.  A bit miserable.

We were going to bump up his IVIG to earlier in the week, but Dr Rosenthal wants to wait until he is fever free before the IVIG infusion.  A side effect to the IVIG is fevers, so we need to know if he spikes a fever, what the true cause is.  Makes sense.  I would like to let him rest up and heal over the weekend and shoot for IVIG next week.. but we'll see... I just don't want to bog him down with all the extra fluid.

I took him to the pediatrician today and we did a swab test.  Parainfluenza was Negative.  RSV Positive.  Darn RSV!  His chest xray looked great, no pneumonia. 

We can't treat RSV, so we just have to ride it out. 

I just hate that he got the virus from me and it didn't drag me down, but it is wiping him out.  Poor guy. :(

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. 

Heart Month!!

It's February 1st, and the kick start to HEART MONTH!!!  It's time to raise awareness for Congenital Heart Defects and my little fighter.  You won't see big celebrity endorsements, telethons raising money, or even much media attention for our 1 in 100.  That's right 1 in 100 babies are born with a CHD!!!  More children die from Congenital Heart Defects than all the childhood cancers combined!  Not a day goes by that I don't hear of another baby being diagnosed, a child going in for an open heart surgery or a mother completely devastated over losing their sweet child to a CHD.  Please join me in raising awareness. 

Three open heart surgeries

Seven cardiac catherizations

One Gtube placement

Six IVIG treatments

Thirty {at least} Echos and EKGs

Four years on oxygen

 Five months waiting for his new heart

 

... this little fighter wears his scars proudly!!

Today is National Wear Red Day for Hearts!!!  I am wearing my red for Owen and all our friends fighting with a CHD!!

And because I am awful at taking self portraits.. seriously.. how do people have such fabulous bathroom photos on facebook.  Totally off subject.  Ha.

Join me in wearing Red for Owen!!  Ok.. go change your clothes if you're not wearing red. Or wear Red pajamas tonight.  Let's raise some attention for Congenital Heart Defects.  February is my FAVORITE month! Happy February!!