Friday, June 10, 2011


(I will start this post with the good news that we are home!  Ok, onto today's post.)

Luca is at the age where she is into everything.  If it is near her vicinity, you can count on her seeing it, and trying to get it.  If she does get it, she wants to pull/bang/examine it.  She is curious, for sure.

This is normally a fun things to watch.  As long as you surround her with kid-friendly items, it is like seeing new objects for the first time through her eyes.  An empty shoe box, how amazing!  A plastic spoon, wow this is the most cool thing I have ever seen.  Ohhh, and the way my hand sounds when I pat the box, the most beautiful sound I have ever heard!

But things are a little different with Luca.  There are TONS of not kid-friendly items near her, and even on her.  Like the two long tubes that stick out of her onesies that go into her liver and bile ducts.  It would be really horrifically bad if she ever pulled those and yanked them even partially out.  And her g-tube sticks out the bottom of her onesie as well.  She has yanked that out a couple times, and it never ceases to startle me when I see the hole in her belly and have to reinsert the tube into her belly. (Here is a post I did about the specifics of her g-tube, and comparing it to a piercing.)

And she also has a PICC line, which is like a permanent IV into her upper arm.  I dangles down long enough for the hand on the arm that it is placed to reach it.  So we keep the PICC tucked under a bandage to prevent her from being curious.

So Luca is learning very early on what my scolding tone sounds like.  I will sometimes turn around for a second to pick up my drink and turn back around to see she is yanking on one of her drains.  I do not mean to scold but I know the consequences of that tube being pulled and the thought of it being pulled sends such alarm and panic through me that I cannot hide it from her.

I normally pry whatever off-limit item from her hands and tell her "no, we leave our tubes alone."  She normally reaches for it again while I find an okay item to hand to her in place of the off-limit item.

This age is also quite challenging for Ian and I to empty the bile drains (the bags that attach to the drains have to be emptied twice a day, and yes it is as disgusting as it sounds).  Or to change her PICC line dressing (the site where her PICC line goes in is sterile and has to have a specific dressing on it, and is done with a specific technique that it require both of us to work together to do.  Only the person who is wearing sterile gloves can touch any of the dressing items).  Or to change the bile duct dressing where the drains go into her abdomen.  This dressing is done the same as her PICC dressing and is a pain to say the least. 

And let's not forget about the fact that Luca has IV meds run 4 times per day, so the IV tubing hangs.  For this, she has to wear a restraint on that arm so that she does not play with the line the entire time.  She really enjoys wearing the arm restraint.  Or not.

Ian keeps saying he cannot wait for Luca to walk.  Easy says it for the person who is not alone with this maniac angel all day.  If she is this into all of the stuff around her now, and she is not mobile, God help me when she is mobile!  Of course I am excited for any new milestone of hers, but I do not mind that we still have some time until she is walking.

1 comment:

  1. Jay (11 months) has been super curious and squirmy too. We have to hold him down to change his diaper because he hates it. I can't imagine having to worry about all the other tubes and things you have with Luca. All I can say is good luck, and I bought a light up toy with a button he can push and it seems to be keeping him calm and focused for a short while:)


Leave me your thoughts!