Skip to main content

Hurry Up and Wait

If you've been following me for a while, you have heard me talk about the "Hurry Up and Wait" method that hospitals love to use to torture families.  You know, the whole idea where the doctors make something seem so urgent that it needs to be taken care of right away...and then...you wait.

Case in point:  Abby's back looks really different now.  There's a piece of the rod sticking up that is very visible under the skin.  She had a bad fall on Thursday, so I decided to contact CHOP to let them know that things weren't looking right and that she had increased pain.  After sending pictures of Abby's back on Tuesday, the nurse practitioner urged me to go get xrays right away.  By the time I talked to her, it was too late to go to Hopkins that day because xray would have been closed.  I took Abby there on Wednesday, got the disc, and contacted CHOP right away to let them know that the xrays were up in the system.

Meanwhile, yesterday evening I shared xray images with others on the VEPTR site, and many felt like it looked like a rod had dislodged.  So...we prepared ourselves for surgery very soon.

This morning, I hadn't heard anything back.  I texted at 10 and was told that she couldn't view the images on their system.  I figured out how to email them (a bit of the challenge using the xray viewing system), then heard nothing.  I texted again to check in, asking if we needed to change our vacation plans.  She wrote back saying that was crazy, that there was no way we should do that.  I asked what Dr. C. thought about the xrays and explained that it looked like a rod was displaced...no answer....nothing.

Frustrating day, to say the least.

A positive is that Abby's pain is under control with OTC meds and she seems to be ok as long as she is sitting.  And, our vacation is still on!  So, we'll be thankful for those things and hope to find out something tomorrow!


Comments

Mary Lou said…
Julie....
Good luck, hugs, prayers and enjoy your vacation!! ;)
"Stay hard, stay hungry, stay alive", Raelyn

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the crayons.  Caleb put small pieces of crayon in each m