"Cautiously Optimistic"

Annie started her feeds on Tuesday evening--just half strength neocate at 10cc/hr.  She did well through the night and all day Wednesday.  Then the nurse told us that the GI had called to tell them to increase her rate by 5cc/hr every 8 hours!  We thought that was pushing it too fast, but she's done well with these rate increases.  She currently is now up to 30cc/hr and still doing fine.  As her feeding rate continues to increase, her TPN rate will gradually decrease.  Once we see that Annie can tolerate receiving all her fluid and nutrition through her g-tube again (without getting dehydrated from too much diarrhea) then they will completely stop the TPN. 

I spoke more to the GI today about the plan for her feeds and he said he'll continue to have her rate increased by 5cc/hr every 8 hours until she gets to 60cc/hr.  At that point he will switch her from half strength neocate to three-quarters strength neocate, and eventually to full strength neocate (not sure the timeline on actually making those changes--Annie kind of runs the show around here.)  I asked the GI how difficult the transition from the neocate to nutren jr (her regular formula) will be, and he actually just wants to keep her on neocate for probably about a month or so until he knows that her gut is completely healed.  (He wants to do a full colonoscopy at that point too, to try to see if she has any underlying issues causing such terrible inflammation.)

The GI is also starting Annie on a drug today called mesalamine which is used to reduce colon inflammation for people with ulcerative colitis or IBD.  The ID doctor is also continuing to decrease Annie's vancomycin dose to eventually wean her off.  So in a nutshell, she'll get the prednisone for about a month, mesalamine for 2-3 weeks, and should be off the vancomycin probably within a week.  At least that's the plan... we re-evaluate Annie each day and monitor her pain, inflammation levels, and number of daily diarrhea episodes to decide exactly how to proceed each day, but that is the longer-term plan assuming she tolerates everything and progresses as expected. Annie is still having terrible episodes of incredible irritability and fussiness, usually in the mornings, so hopefully that will go away once she's off the prednisone in about 3 weeks.  (We'll definitely keep the melatonin on hand until then!)

Annie spiked a fever yesterday, so naturally, they ordered a blood culture and urine culture.  Her latest blood work showed that her ESR (another marker of inflammation) is at 48.  It was over 100 at its highest, so there's been some good improvement, although it should ideally be below 10.

So, we are feeling rather optimistic. At her current rate of increase on her feeds, she'll reach 60cc/hr by Saturday evening, then spend at least a day or two transitioning to the three-quarters strength neocate, and another couple days transitioning to full strength neocate.  As long as she is tolerating full strength neocate at 60cc/hr and isn't having so much diarrhea that she's at risk for dehydration, we should be able to go home.  So I'm thinking that maybe within 5-10 days we could go home.  No doctors have actually talked to us about that or mentioned a timeline for going home, but we think being home in 5-10 days from now could be a realistic possibility if Annie responds well to all the changes in her meds and feeds.

But even once we get Annie home we'll still have improvements to make before she's back to her normal routines.  She'll still be on the prednisone (and thus the melatonin) as well as the mesalamine.  The prednisone suppresses the immune system, so it will probably still be a while before we feel comfortable sending Annie to school again, especially since if she caught anything that required antibiotics to treat, her c-diff might come right back.  Also in a month we'll need her full colonoscopy done and who knows what that will end up revealing!

But we are optimistic today that we might at least be able to all be home together as a family again soon!  (Our pediatrician today said himself that even he is "cautiously optimistic"--a good way to describe our feelings.)  Our house has felt so empty without Annie and it's been sad for me to see her bedroom empty for so long.  I can't wait for her to come home with us!  I'm trying to think of how Annie would most like to celebrate her return home because we definitely need to have a party.  I think a haircut will be at the top of the schedule of whatever we plan! And maybe a manicure and pedicure too since she can't have painted nails for so many tests and procedures she's had here in the hospital.  I know that she'll definitely want to go for a walk and get outside after being in isolation in her teeny room for almost five weeks now!  I'm sure it's just these little things she'll love!  I'll just be happy to have us all together again!