Nora’s GI appointment at the end of last month went really well. We had a good thorough discussion with her doctor about what’s been going on with Nora and her care plan. Overall Dr. Dimmitt thinks she’s doing great but would like to see her gaining weight a little faster. She’s currently 25lbs which is in the 3rd percentile for her age. Last time they saw her 6 months ago she was 23.5lbs so a 1.5lb gain in 6 months isn’t very much. Ideally they’d like to see her gaining a good 6oz a month which sounds reasonable to us.
So the plan is to increase her Elecare calories getting her up to 30cal per oz. (which we probably should have done a while ago but had been focusing more on foods) and to increase her Omegaven from 50mls 3 nights a week to 90mls 3 nights a week. Nora’s Omegaven dosage has never been increased since she first started it at 3 months of age. Her TPN will stay the same which is 335mls 3 nights a week. Her doctor thinks that just by increasing her Elecare calories and Omegaven calories that her weight should pick up pretty easily without changing anything else.
Also discussed was the concern of a couple test results. We did a 72hr stool collection last month to test Nora’s fecal fat (which means the amount of fat she’s loosing through her stool = fat she’s eating but not being absorbed). Her results were concerningly high and left all of us scratching our heads because Nora is doing so well. Even though her weight gain has been slow she is well proportioned and filled out. Dr. Dimmitt’s response to the test result was regardless of the high number, Nora is doing very well and advised me to try to not to focus on the numbers too much. He’s good at helping me keep my mind grounded. If the results were correct, his main concern would be high oxcalate absorption from the bowel so at some point in the near future we’ll check her urine for crystals as a precautionary screening.
The other labs that have been causing us some concern are Nora’s liver enzymes (AST & ALT) have been a bit elevated for the last few months. Since she is on Omegaven and her TPN dosage is so little this doesn’t make much sense. Nora has been on a vitamin D supplement for quite some time due to a low level in the past. Her vitamin D level hadn’t been checked in a while and when it was checked last month it was also elevated. Too much vit. D can can cause toxicity in the liver so hopefully this was the cause of her elevated liver numbers. Nora hasn’t had the vit. D supplement for a full month now so hopefully when she gets this months labs drawn we will see that both her liver and vit. D numbers are back in normal range.
Nora has been on a water soluble vitamin called AquADEKs which are great because they are easily absorbable. But they are also a very bright orange and are wrecking Nora’s teeth and have stained them pretty badly. So since all of her other vitamin levels are in the normal range we are switching her back to Poly-vi-sol. But just a suggestion to those with g-tubes I highly suggest the AquADEKs since you can bypass the mouth and still benefit from their easy absorbability.
Nora traveled really well this time. Before now, going to Childrens in Birmingham was the farthest Nora had ever traveled in one day and it has always been stressful on her system. This time we went to her GI appt. on the way back from our visit in Kentucky. When we drove up to KY we drove all the way in one day, 13 and 1/2hrs and Nora did great. We made frequent stops and she ate and pooped normally which has always been a challenge in the past. She would just tell us when she had to poop and we’d pull over. Nora doing so well on this trip really gave us the confidence to know we can start having more fun traveling with our girl.
At the end of the long trip Nora did end up coming down with a bad cold with fever. Even though we weren’t around anyone sick, these things are bound to happen when traveling which is why we’d been so protective of getting her too far from home before. But thankfully Nora bounced back after just a few days. We hated that she got sick but it was good to see her system so strong and recover so quickly.That’s our Super Nora! 🙂