Making Feeding Progress

This past weekend the focus has been on slowly increasing Annie's feeding rate.  We've been pleasantly surprised at how well she's been tolerating her feedings.  She has now worked up to a rate of 65cc/hr on 3/4ths strength neocate.  The next step was to go to full strength neocate at 65cc/hr, but after doing the math I realized that 24 hours of full strength neocate at 65cc/hr would give Annie 50% more calories than her normal diet at home and no water.  So in order to get a better balance of water and calories more typical of her normal diet, I suggested we start her normal schedule but just do each feeding at a rate of 65cc/hr.  The pediatrician agreed with that and copied down the schedule I had made up.  We'll try that schedule today still at 3/4ths strength neocate and if all goes well, we'll try the same schedule tomorrow with full strength neocate.  We'll keep her at that for a day or two and then start to slowly increase the rate of each feeding until we're up to her typical 85cc/hr.

That all sounds easy enough--like a great plan--but the trick is to make sure Annie continues to tolerate these feeding increases without starting to vomit.  The other thing we'll be watching is her diarrhea--working to get back to her normal feeding schedule could cause her diarrhea to increase, so as long as she's not having enough diarrhea to become dehydrated again, we should be able to come home.  So, Annie is the boss this week.  She has been tolerating everything incredibly well so far, so we're hoping she continues to make good progress with all the changes.

Last night we were able to stop her TPN and lipids since she's getting so much volume from her formula now.  So I'm incredibly happy to not have IV pumps beeping throughout the night and keeping our room brightly lit at night!  (Annie still has her subclavian line in place, mostly for blood draws and the couple IV meds she's still receiving).  Annie is also down to just 65mg of vancomycin every 6 hours and will most likely wean completely off that today or tomorrow.  Our biggest frustration is the mesalamine medication.  It doesn't come in a liquid form, but a capsule full of little beads.  The beads can't be crushed or they won't be effective, but the beads are so big that they are clogging up her g-tube.  It's been a huge hassle to try to get all the little beads in her while trying to keep her tube from getting clogged.  Although this morning we did discover that applesauce through her tube helps suspend the little beads without clogging. Hooray! 

Annie is still having periods of extreme irritability from the prednisone, but she also has happy times throughout the day too.  Her melatonin is working great at night too.  The more we've started feeding her the more she has started to drool profusely again, but I think we'll take a break from hospitals for a while and wait until next spring to think more about her salivary gland ablation procedure in Ohio.  This week I'll be happy for her to just continue making good progress with her feeds!

Annie's special education teacher and 3rd grade teacher came to visit her on Friday.  Annie was happy to see them and gave them huge grins!  I know she misses her teachers and friends at school and I'm sure she can't wait to get back!  Her class was so sweet to make this cute turkey for her full of well wishes.  Annie has loved looking at all the bright colors on it and hearing what all her friends wrote!  Thanks so much 3rd graders!