Tube to stop the slow spiral...

Kate didn't do as well today. She struggled eating and was pretty lethargic today.

After her apple juice 'pick-me-up' this morning, she struggled to eat the rest of the day. She would eat about a half ounce, and then get tired and stop. Ugh. Then she would get low blood sugar again and need some apple juice (which would make her blood sugar spike). She started a slow spiral downhill: less eating = less energy to eat = less eating = less energy, etc... So, after a long discussion with the Dietitian, we ended up deciding to have an 'NG tube' put in (feeding tube through her nose direct to her stomach). This should give Kate a break and increase her energy. Right now, she is getting a constant feeding via pump through the tube and is tolerating it well. She's had the tube since mid afternoon.

Kate slept for a few hours after the tube was put in and woke up about 7pm pretty fussy. She's either getting fed to fast (possible, though manageable), or more likely beginning to feel constipated. We were warned that constipation was a real possibility (there's basically no fiber in her diet and fat is constipating). We'll have to watch her 'output' to see if any interventions are necessary. Sure would be nice if she could tell us what was wrong - this guessing thing is pretty tough!

Hopefully tonight will be a good night. At least she won't wake up hungry!