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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Monday, December 28, 2009

two is better than one...

quick update bc well...i just don't feel like being on the computer right now, really, but i wanted everyone to know what's going on.  a few pics are here.

if you hadn't gathered, we are back at the hospital.  we aren't 100% sure what happened, but ridge was having a massive, PICU bound bleed on Friday (Christmas)....we got him all recovered, WITHOUT heading to ICU, and he has been stable since Sat. morning.  We are still at the hospital, however.  We are going to do some "fine tuning" on some medicine issues and we are also getting....a PORT!  I am incredibly excited about this.  Ridge has a central line, and will continue to have that, bc it is necessary since he has a continuous infusion of Octreotide.  However, finding a vein for an IV is sometimes a very difficult process, and we did not have time to waste Friday on finding a vein.  After over an hour of trying, the PICU dr. came by and said he's set an EJ-- external jugular- an IV in Ridge's neck.  They got this one very quickly, but it is not really a place we want an IV all the time (as in, I don't want that being where they have to go for the IV every single time we need blood)....ANYWAY, so discussion arose about a PICC line, which is in the arm.  It is more permanent, and he could go home w/ it.  This is a great option.  BUT EVEN BETTER was the option one of our docs came up with today- "how about a port?"  a port is permanent, and isn't open to the world, and doesn't require any maintenance really on our end of things.  So we'd use his central line at home, but the port would be there, under his skin, for when we came in to get blood or when his central line clotted off, or whatever.  It would be a second access.  And it would save all that searching for an IV.  Our surgeons haven't ever put a port in a kid this small who ALSO has a central line.  But tomorrow, at noon, Ridge will be the first here to have it done.  But he's been the first for other things, now hasn't he?

So pray for us tomorrow-- that the procedure goes off w/o a hitch...and that things are as good as we think they will be! it will be an exciting day!

oh, and i don't know when we get to go home, so that's not included in the update bc i don't know when it will be!

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