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Monday, June 6, 2011

GI visit today, EGD tomorrow

We had a pretty dull & uneventful GI visit today. I thought there would be more to it after the way things have been the last 3 weeks. Today Raya weighed in at 23 lbs 2.9 oz, so she's up 3 oz from Thursday. I think it's because her pump was off for 3 hours before she got weighed last time but it was running all day today. Interestingly enough, I was looking back at her previous weights and on January 3rd, she weighed 23 lbs 5.4 oz. net weight gain in 5 months...
Dr. S asked me today if I wanted to switch Raya back to her previous formula (Neocate Jr.). I don't. I said no, that I didn't think that was a good idea and she said she agrees because GI-wise, Raya has done so much better on Peptamen Jr., even if it does give her eczema. You win some, you lose some. She offered to refer us to dermatology but I politely declined, mostly because I'm feeling maxed out on appointments right now. :) I didn't tell her that my favorite thing about switching to Peptamen is that all I have to do is pop open cans rather than actually have to use my brain to calculate powder vs. water, mix it, etc. Lazy, perhaps, but canned formula has been SO nice. :)
We went through the usual stuff: meds, feeding schedule, frequency & consistency of poopy diapers (must be fun asking people about poop all day long), frequency of wet diapers, and last but certainly not least, bile drainage. She asked what happens if I leave her tube clamped for more than a couple hours at a time and I told her I don't do that because I'm afraid that she'll start throwing up again, and because Raya gets really uncomfortable after an hour or 2. Then when I unclamp her, 1 or 2 hours' worth of fluid gushes out. So yeah, I don't leave her clamped for more than an hour or 2.
Then she read me the radiologist's report. Normally I pay really good attention and take notes but today most of it went in one ear and out the other. I was kind of in a funk. She said that there was thickening of the folds of the duodenum and pylorus (I think) that could indicate an ulcer, but the radiologist didn't see anything that looked like an ulcer. There were no obstructions, no hernias, no blockages, etc. etc. So as usual, mostly normal. She asked me if we wanted to try and squeeze in an endoscopy tomorrow or Friday or if we wanted to wait & see how Raya does while she's out of town the next 2 weeks & then do it when she gets back. In my most polite voice and with the nicest words I could get out of my mouth, I told her that I've been "waiting to see" for the last 3 weeks and I'm kind of tired of waiting to see if things change on their own. Nothing's gotten better, and she's losing weight and draining more fluid than a kid her size should drain, so I want to get it done sooner than later. Luckily, the nurse had set aside a time for us tomorrow at 4 just in case Dr. S wanted us to have it done tomorrow. I totally owe her. :)
In case I haven't said it before (I'm pretty sure I have) I love her GI doctor. I appreciate the fact that she asks me questions and actually takes my answers into account, and we make a lot of decisions together rather than her just telling me what to do. Sometimes I feel like I'm a little obsessive about things, like how many emails I sent the nurse in the first week or 2 of this excessive drainage problem. When the doctor said something about having read ALL of my messages about it, I got a little embarrassed but she said she was glad I had sent the emails and that it helps her "immensely" and I shouldn't feel self-conscious about that. Anyway, I just appreciate the fact that she talks to me like I'm an intelligent person that's capable of understanding what she's talking about.
Aside from all the nitty gritty stuff, Raya was just as charming as could be while we were there. I used to bring her in in the stroller because it was easier for me but now if I try to do that she just squawks the whole time. The last few times we've been there, I bring her in and strap on her backpack and just let her run around the waiting room. She loves it, especially because people usually talk to her and tell her how cute she is. Today she was walking around like she owned the place. They had the door from the waiting room to the exam room area open and she kept saying, "Raya! Raya!" and then walking back to the exam area like it was her turn. I guess she knows the drill. :) Her nurse wanted to hear her say "backpack" but she wouldn't do it. Maybe next time. :) It was kind of tiring chasing her around and keeping her out of things the whole time we were there but thank goodness we've moved past the stage of crying and screaming the whole time and then throwing up.
So tomorrow we'll go explore a little bit more of the brand new addition to the hospital and Raya will take a little drug-induced nap so they can put a camera down her throat & take tissue biopsies while I play a few rounds of scrabble on the DS and try not to feel guilty about my sister-in-law whose husband has been out of town for over a week watching my other 3 kids plus her 4 kids. Sounds like a fun day to me. :)

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