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A Big Decision November 21, 2013

Filed under: Uncategorized — ryangrace11q @ 1:20 am

I wish the decision were made for us.  Usually a doctor says “this is what you should do” and we do it.  On the rare occasion, we go against what a doctor says because we know Ryan best and it’s always worked out.  But this is a tough one.

To give Ryan IV antibodies or not?  It’s our decision.  Not the doctor’s.

If you’ve followed Ryan’s story at all, or know us personally, then you know that she’s struggled with sickness for her entire life.  So you might be thinking that this is a “no brainer”…. but it’s not.  After struggling to get enough blood from Ryan’s itty bitty veins to get all the tests done, and seeing her cry, scream, puke repeatedly, hold her breath, turn blue, and almost pass out, you’d understand why this isn’t so black and white.   She just can’t handle the pain of needles.  And our choices are these: a once a month IV antibody that she will have to sit for hours to receive at the hospital or a once a week subcutaneous antibody that she’d have to sit for 1 hour to receive at home.  Both require sitting and needles and pain.  Ryan doesn’t do sitting or needles or pain.

Today at the immunology follow-up we learned that Ryan’s immune system overall looks pretty good.  Her B-cells and T-cells are good and her titers for the pneumovax-23 vaccine are good as well.  The problem is that her immunoglobulins don’t look good.  In fact, the IGGs look downright bad.  What does it all mean?  It’s long and complicated so you might just want to google it but the short version is this:  She is a good candidate for replacement antibodies because even though the majority of her immune system looks good on paper, the fact that her overall antibodies are low (IGG) means she is still getting sick.

Ryan is very lucky in the grand scheme of things.  She isn’t landing in the hospital every time she gets sick and the prophylactic antibiotic she’s on seems to be doing an OK job of keeping all the sinus junk away.  But she gets a virus every few weeks.  That means a fever.  That means no daycare.  That means staying home from work.  My sick days are dwindling and every time Katie stays home she doesn’t get paid.  Katie’s parents have helped tremendously and when my parents are in town they keep Ryan home, but we can’t always do that.

The doctor has basically left it up to us.  She doesn’t see a strong enough case to definitively say we should or we shouldn’t.  Yes, Ryan gets sick… but it’s not that bad… but it’s often enough to mess with her pretty good.  And to put our poor little sweetie through all that pain and suffering?  We just don’t know.  The doctor told us to think about it and take some time to decide.  So for the rest of the year we are going to log all the days that Ryan is sick and by January we hope to have a decision.  Until then, we hope to just enjoy the holidays with our beautiful daughters.

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