Wednesday, July 7, 2010

One appointment DOWN

…and the angels rejoiced…

Today we went back to the GI specialist to talk about Piper’s difficulty with drinking whole milk.

I’ve been pretty nervous about it; I hate having to rationalize why we do things, how we decided to do it, and why we think it’s a good idea.  I feel like the doctors we know and see often trust my instincts, but when we see someone new, it’s like we always have to start from scratch.

One nice thing about the clinics at Children’s is that when you see a clinic, they will always keep you with the physician you saw the first time.  So, the guy we saw when Piper needed her gallbladder out is a really in-demand guy, but we still get on his priority list.  Which is great, because we really like him.  We talked about her cholecystectomy.  He was really glad to hear that it was going so well, and said that he was glad to get input that he could pass on to other parents in the same boat.  He looked at her growth chart, and said that even though she’s l-o-w on it, he was happy with the pattern she has struck. 

…and the angels rejoiced…

Theeeen we talked about the issues she’s been having.  He was a little stumped, and offered a few ideas.  One possibility is that there’s a stone that got stuck in a biliary duct somewhere, and that’s what causing it all.  So we went ahead and tested her pancreatic and liver functions, just to be sure that there’s nothing obvious going on there.  Another option is that her body just hasn’t adjusted to not having a gallbladder.  The bile that the gallbladder emits helps in digesting those fats, and without the proper amount of bile, fats aren’t necessarily digested appropriately.  If this is the case, there’s a good chance that as time goes on, her body will get better at functioning without the gallbladder (which has been, by the way, my theory from day one).  So, the conclusion is that, unless there’s a stone stuck somewhere, there’s not a lot we can do at this point.  In fact, he said that, although they’d much rather her be on whole milk, if all it takes is to move her to 2%, there’s not much discussion needed.  If she gets worse, however, and has more problems, we’ll look in to some other alternatives. 

So, since we were doing a blood level to check her pancreas and liver, we went ahead and did the celiac screening, too, since there’s an increased incidence of it in the Ds population.  So me, being the wonderful mama I am, sent Luke by himself to do the blood draw, because it’s about time.  Long story short, about half an hour after they were called back, I started getting nervous.  I stepped back to the door and could hear Piper screaming.  I asked the nurse to make sure it was my kid, and I went back.  They had to stick her in both arms, and fished both times about 10 times.  And they still had to suck it out in the end because she was clotting too quickly.  Poor, poor Piperdoodle.  That’s the first time we’ve had any trouble getting a blood draw.  I’m pretty sure that there are folks in the lab who “specialize” in newborns, and once you hit a year, you don’t get them any more.  But, since Piper’s really the size of a less-than-12-month-old, I’m thinking about requesting one of them next time. 

…and the angels did not rejoice…

So, anyway, we’ll get the blood test results tomorrow or Friday.  If they’re clear, we don’t have anything to do/not to do unless something goes awry.  Phew!

And, for you viewing pleasure, I finally got a picture today of Piper’s half smile she’s been sporting lately when she’s playing coy.  While we were in the waiting room in the lab, she was using the stools on a kiddie table as a standing table.  Guess that’s what happens when you’re barely 25” tall. 




  1. Oh Piperdoodle, so sorry to hear about the blood draw. Hopefully you won't need another one for a while (I have a sneaky suspicion that mom will escort you for that one=)!
    Hoping the 2 % milk takes care of the issue and that you are done with those worries.
    Love your new little half smile, you continue to amaze me with your cuteness factor!

  2. What a long day little girl. Hoping for good results. We've been trying dairy/milk with Aubrey for 6 months and finally, at 22 months, she seems able to handle the milk and is taking about 3 oz a day. Hang in there and follow your instincts.

  3. I hope the results come back with good news. We just had to switch our Jack (1 yr old and a few weeks..tiny too) to 2%. He couldn't tolerate the fat in the whole. So far, so good. He does have his gallbladder though - so not quite the same situation. Anywho - I have been following your blog for a while and am always thinking of Piper. Hang in there.

  4. I hate blood draws! We have never had a good one with Claire. It was one of the worst parts of her OHS. We always requested PICU/NICU nurses and it would take them FOREVER to get blood out of her.