Skip to main content

Q & A

It's been a while since I've done a Q & A, and I was asked a question the other day on Facebook.  I figured I would answer it on here and offer for anyone else to leave a comment on here or FB, or email me, or ask me in person, or whatever, if you have a question...about anything, not just Abby!  The worst I'll do is not answer it.  :)

Send them in the next few days and I'll try to have the answers up by Saturday.  Happy asking!

Question:   I am curious as to know if Abby ever pulls at her tubes or the vent. I am amazed that as curious as babies are that she does not do this...

So, far, the vent tubing hasn't been too much of a problem (insert knocking sound here).  The tubes are pretty thick and strong, so it will take a while for her to actually pull them out.  Plus, the part where the circuit (tube) is connected to the trach is tied on around her neck.  This is the white string that Abby just loves to untie and chew on!  Really though, she hasn't intentionally pulled anything off.  It happens occasionally, but not too often...yet!

Where we have noticed the real problem is with Abby's feeding tube.  When she's getting fed, there's a very long (maybe 2 yards?), thin tube that runs from the bag and connects to the short connector tube.  This connector is actually what clicks into her g-tube.  Anyway, this loooooong thin tube is just the perfect size for little fingers, and the part where it goes into the connector tube is oh-so-enticing.  She loves to pull on it and wave it in the air.

Now, let's think for a minute.  What happens when Abby pulls on the part where it connects?  Ding, ding, ding!!  It comes apart and milk goes everywhere!!!  Then Abby, her blankets, close-by toys, and anything else within spraying distance all smell like sour milk.  Lovely.  We've had countless messes to clean up as a result.  During a recent doctor's visit, she pulled it out 4 times in the car!  Thankfully, I was right next to her and avoided the mess.  We try to keep the tube out of her reach, but that is hard in certain situations (like in the car!)

The other, slightly comical, problem is that sometimes if she pulls really hard, it jerks her g-tube site a bit.  I know, I know, I shouldn't laugh at that...but she is doing it to herself!!  I keep telling her that when she pulls on the tube, it hurts her.  She hasn't quite figured that out yet.

So send me your questions, if you have any!  :)

PS:  Yes, I am in fact posting this at 2:30 a.m.  We don't have a nurse tonight and I'm taking the late shift because Matt is going to Kings Dominion tomorrow with the youth group.  Blogging is keeping me awake.

Comments

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