Yesterday was exhausting. Liliana and I left the house around 9:30 for CHOP. Our 10:30 appointment at the brace shop was easy enough; the orthotist changed the two front straps on Liliana’s brace to be extra long so that it can accommodate her growth. We haven’t tried it on yet, but I’ll be putting it on her when she wakes up.
After that, we headed to General Surgery for our surgical follow-up and the change to the button. For some reason they had to have the surgeon come in to see us, which was problematic because he usually only does outpatient office visits on Thursdays and it was a Tuesday. Our appointment was at 11:30; we saw the doctor at 2. I don’t blame the surgeon at all for the wait, but I guess I would blame the policy of having to see him. It was a very short discussion, as I had no questions and Liliana’s recovery has been very well apart from her teething-retching phase last week.
In any case, when the surgeon came in with the nurse practitioner and nutritionist, Liliana lit up and was all smiles. I thought it strange because she’s usually shy, but maybe she’s getting used to (and liking) having people’s attention.
I think Liliana weighed in at 6.95 kg yesterday, which is 15.29 lbs. They said that she hasn’t gained as much weight as they’d like, so the nutritionist increased the volume we’re supposed to give her. For bolus feeds (the ones we do during the day), they have a general rule where the max caloric intake should be 15 calories per kilo; with Liliana’s weight rounded up to 7 kg, each bolus can only go up to 105 calories.
The nutritionist suggested doing 100 calories for the bolus feeds, and doing 50 ml/hour for 8 hours overnight. So basically, it would be 800 calories daily, which our GI doctor had us on before the surgery. Sean and I will probably adjust the feeds according to how hungry Liliana’s feeding…for example, if she just ate 2 hours ago and she’s acting hungry, we’d probably put more formula in the next feed.
After the nutritionist left, the nurse practitioner got everything ready to change Liliana’s G-tube into a button. We now have the Mini One, which is supposed to have a lower profile than the Mic-Key button. There’s a little balloon inside Liliana which holds the button in place; it’s inflated with 4 ml of water, and I’ll need to make sure, in about a month, that it still has 4 ml. Other than that, there really isn’t much maintenance to do apart from making sure that extra skin (technical term: granulation tissue) doesn’t grow around it.
The only downsides I’ve encountered so far are that Liliana now has a shorter “tether” to her feeding pole so I have to be extra vigilant that she doesn’t get too far from it, and I haven’t found a way to make sure she doesn’t pull on the extension set that goes into the button during her feeds. I guess she’ll eventually learn, but the extension set has pretty purple caps on the end; when the red tip from the feeding bag is inserted into a purple cap, it looks like it would be something fun to play with or at least hold.
Okay, this is getting much too long! More on Friday!