October 16, 2019
Olly update for today... she's been doing a glucose challenge all day (no food or drink since 8am-11pm, pokes for sugar measures every hour). She passed, blood sugar in 70s and 80s (needed to get below 50 and didn't happen). Really good because her body is doing what it's supposed to. Leaning towards storage issue and not an insulin overproduction issue now.
Just converted her nj tube to ng tube and will see how she tolerates that. Food coming once xrays say tube is in the right spot. Adjusted it at 7pm and it was not, finally started feedings at 11pm it’s been a process.
Surgeons recommendation is a gtube and not gj-tube. We agree if she keeps feedings down tonight and tomorrow. Surgery to put in gtube Friday most likely and then maybe go home Sunday.
The drs think she is having minor seizures, but unsure. So she is on seizure meds until we can do an EEG. Seizure meds she is on have almost no side effects and won't affect blood sugars. EEG to happen here or outpatient next week sometime.
Fever is gone, still on miralax and pooping like a champ (even on mom 🤣). She is hangry and didn't get much sleep due to all the pokes. Prayers tonight are that her ng tube goes well overnight, no complications with it or feedings, and that she gets some solid sleep. 🙏🏻😴
Olly has been a trooper through all of this. Her heels and toes have been poked more time in the last week than many people get poked on their entire body in their entire lives.