A Long Night and the Short-Term Plan

Annie has been continuing to tolerate her feedings really well.  The last two days she has been at 3/4ths strength neocate at 65cc/hr.  But yesterday morning Annie woke up screaming and crying with intense pain.  Of course we had no idea what the source of her pain was, but we immediately gave her tylenol.  It finally kicked in after about 70 minutes, and what a terrible 70 minutes it was!  Annie was completely inconsolable.  She's had pain like that in the past, but none for over a week or two, so I was surprised to see it come back now.

Annie did well the rest of the day yesterday, but then had a long, rough night last night.  She slept from about 10:00pm til midnight, then woke up fussing.  I took off her CPAP, vented her, and gave her a binky several times, but the fussiness just escalated.  By 1:15am I asked for some tylenol for her, however, the crying just continued to worsen.  I stood by her bed for another hour waiting for the tylenol to work, venting the air out of her stomach and changing her position, none of which eased her discomfort.  By 3:00am I realized the tylenol wasn't going to be effective and called in the nurse for some stronger pain meds, but unfortunately, they had removed morphine from her drug list.  She couldn't have motrin because she's on the prednisone still--I'm skeptical motrin would have even helped. 

The nurse wasn't sure what to do at this point, so she came back to our room with the resident at 3:30am to discuss some options.  The resident suggested we could give the ativan even though it's for seizures, they knew it would have some sedating effects.  We considered stopping Annie's overnight feeding, although we agreed that such a diluted feeding like she gets overnight shouldn't be causing her issues.  The resident also suggested mylicon for gas since we were venting so much air out of Annie's stomach over the previous 2 hours.  However, as we were discussing the pros and cons of all these options, Annie started to calm down and drifted off to sleep around 4:00am.  She only slept for about 10 minutes, but then woke up content and talked the rest of the morning.  The new resident on the day-time shift then came in at 6:15am to do her assessment, followed by the pediatrician shortly thereafter.  So I slept from 10:00pm til midnight, then off and on again from 4:00-6:00am while listening to Annie talk.  Needless to say, our goal is to take naps today.

I'm still surprised that Annie's melatonin had no effect on her last night.  I had fallen in love with melatonin the first night they gave it to her and expected another smooth night last night--otherwise I never would have offered to do 3 night shifts at the hospital in a row!  Of course we still have no idea what the source of her pain is, but it's suspected that her gut is still causing pain as it's continuing to heal and get used to having more and more food going though her GI tract.  I'm just hoping these episodes of pain don't continue and that she'll start sleeping better at night again.

So here's the plan for the next few days--as long as Annie cooperates.

• Today: run full strength neocate feeds on Annie's regular feeding schedule, but at a slower rate of 65cc/hr for each feeding--today will be her first day on full strength formula.
• Thursday: continue the same feeding schedule and rate as today, but switch Annie's prednisone from IV to oral form to see how she tolerates that med change--with Annie's malabsorption issues there is concern that she won't absorb enough of the oral prednisone and her inflammation and pain could worsen.  They also want to make sure that the oral prednisone doesn't upset her stomach.
• Friday: continue full strength neocate on her regular schedule, but increase the rate of each feeding to 75cc/hr
• Saturday: increase the rate of each feeding again to 85cc/hr--her normal rate.

Of course Annie is the boss and ultimately in charge of this schedule.  This is what we plan to follow if Annie tolerates everything really well with no vomiting, no increase in diarrhea, and no increase in pain from inflammation.  So we suspect that the very soonest they will be mentioning the "H" word will be Sunday, but Monday or Tuesday might be more likely.  I'm so anxious to get Annie home, but I don't want to get her home too soon and be worrying about issues popping up after we're home. But after almost 6 weeks in the hospital, what's a few more days?