Monday, February 2, 2015

Busy day (GI follow-up)

Reagan slept well last night until 4am when she woke up fussing. I moved her to her chair and gave her some clonidine, hoping she'd settle down and fall back to sleep (clonidine worked well last night to help her fall asleep). Not this time! She had a paradoxical reaction to it and went CRAZY! She got very upset, was flailing, biting, and just all around upset! After an hour or so of fighting her and realizing she wasn't getting any better, I gave her a dose of oxycodone and within 20min she was asleep! On a good note, when she woke up, she was her normal sweet happy self! Whew! Crisis averted! She had a super busy morning this morning with speech, OT, & PT all back to back to back! It wasn't her best therapy day, she's still really crunchy and into her hand, but she tolerated everything. Then we left around 2:30pm to head into Dell for her GI follow-up. We hadn't seen her GI doc in months and he was very happy to see how well she has been doing with the gamble we took in changing her formula back to the low calorie formula she did so well on two years ago! Of course in switching her formula, we have had to steadily increase her rate in an attempt to get her close to the same number of calories she was getting before (we have gone from 55mls/hr to 70mls/hr very slowly). So now she's getting 1400mls a day of formula, instead of the 1000mls formula +100mls water she was getting before. Fluid intake-wise, this is a lot closer to where she should be. Calorie intake-wise, it's still only about 933calories instead of 1000 (and 1000 is very low for her age/size, but she obviously doesn't require a "normal" caloric intake because of her decreased mobility, etc...). The good thing, she's been maintaining her weight well. She's still right around 47lbs which puts her in the 15% for her age and her GI doc is OK with that. So for now, we are going to hold steady at the current rate/volume and just keep an eye on her weight (checking it every 2 months on their scale). Since switching her formula, over the last however many months, we've noticed her having more good days in a row (she's going approx 2 weeks between bad days), less bad days (just one on average compared to 2-4), and no real nausea to speak of! This has been a HUGE blessing! Huge! Hoping by keeping her rate steady and not making any changes, we can ride this out for a while. Thank you for praying for our girl!

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