G-Tube update

Went to see the girls' GI Specialist, Dr. Freeman, today. Both girls are gaining great, a little too great. I never thought I would EVER hear that. Here is the rundown on each kid.

JAZZMIN:
59.8lbs. vitals all great. Cutting her back from 1.5 cal formula to 1.0 formula and increasing the volume by 4 ounces. Got the report from her sleep study a few weeks ago. Impression: "This study is abnormal due to the presence of: 1. prolonged sleep latency and frequent arousals, some of which may be the testing environment and noise from the feeding machine." Pretty much means that she takes a prolonged period of time to fall asleep and woke up several times during the night. The report said she woke up an average of 8 times an hour and a total of 55 arousals. That seems like an awful lot. No onder she acts like a cranky, moody, hormonal teenager! Her pump isn't loud at all really, and I do not recall it having alarmed at all during the study. Not sure how the constant light whirring of her pump would have caused her to wake up. Also said that there was a total of 6 respiratory events. 4 central apneas and 2 hypopnea. So what does this all mean? Not a freaking clue. Now we have to see a neurologist. Probably have to go back to Chapel Hill because there isn't a pediatric neurologist who specializes in sleep disorders here in Wilmington. No change in meds.

SOLARA:
38.4lbs! vitals all great. Cutting her formula in half from 24oz. to 12oz. and completing the missing 12oz volume with water. She is consistently gaining great, but keeping her on this rate will send her BMI over our ideal percentile. We noted that she has very sweaty hands and feet ALL the time and complains she feels hot when no one else does. She also had her first g-tube replacement today after multiple episodes of panic of me trying to do it at home over the last few months. She has had the same button since her surgery in December and it wasn't holding water in the balloon very well anymore. Boy was that thing gross when we got it out. She is on a compounded formula of Xifaxin and it is so super orange. It stains everything it touches. Her connector extensions are all a stained yellowy-orange and so was the button. Now she has a shiny new mic-key button. Got a prescription for the AMT Mini-one button sent to the health care supply company. Jazzmin has this one and I love how low-profile it is. Definitely a lot less noticeable.


Nothing much more to report. We did get to see our friend Lauren today. She and her little brother are tubies too and we see the same doc. Little brother, Brent, wasn't feeling well though. Hopefully we can set up a sleepover at our house with Lauren. The kids don't get to do that very often. I am sure they would have a great time. We shall see! My girls have only ever stayed with my mom and that is NOT often at all! I have a hard time with it all. Convincing a momma of a tubie to let them stay over night somewhere is not an easy task, even when its with someone who has been trained to care for them. Such is the life!



CHEERS!