Sleepless in Omaha

Apparently Annie liked her hospital bed better than her bed at home.  Or maybe melatonin just doesn't work any more.  Or maybe Annie is really actually having pain, not just irritability from the steroids.  Or maybe after 6 weeks with a parent sleeping in her room and nurses visiting throughout the night at the hospital, Annie's now getting lonely at night.  Regardless of the cause, Annie is not sleeping.  Yes, we've been faithfully giving her the melatonin at bedtime, but Annie is usually awake and fussing by 1:00am, some nights as early as 11:30pm.  Nothing helps her drift back off to sleep.  We've gotten her up in her wheelchair in the middle of the night, and even let her watch TV in the family room.  We've also moved her to the love sac downstairs to watch TV in the middle of the night.  We've repositioned her, vented her, scratched her back, rubbed her head, played calm music, and given tylenol.  And yes, this pattern continues throughout the day as well.  She is so absolutely exhausted all the time but is unable to fall asleep.

So the last couple days we have resorted to sedating her with the Ativan that they sent us home with.  We thought it was silly for them to give us a prescription for Ativan since Annie's seizures returned to normal once she got re-hydrated the second week in the hospital, but the script actually does say to give Ativan for breakthrough seizures and agitation.  We aren't fans of how Ativan affects her breathing, so we've held off on giving it to her, but we have become desperate.  We are giving her a slightly lower dose than what was prescribed and it seems to work magic... until it wears off.  It would make sense to just give her more once it wears off, but Ativan can only be given every 8 hours, even though the drug appears to only work for about 6 hours.  It's those 2 hour windows that feel like they will never end as we helplessly try to console Annie, to no avail, pleading with the clock to move quicker to the time when she can get more Ativan.

Besides the sleeping issues, Annie seems to be doing relatively well.  She is maintaining hydration on her own, despite her two episodes of diarrhea every day, but continues to require venting of her stomach every few hours.  She remains on the additional 5 medications--the mesalamine even increased in frequency.  Of course only 2 of Annie's 8 drugs are actually available in liquid form, so preparing medications three times a day is proving to be quite time consuming: opening capsules and mixing contents in applesauce and water depending on the drug, crushing pills and mixing in water, and opening packets of powder to dissolve, and don't forget her formula now has to be reconstituted as well.  Annie's bathroom now looks like a small pharmacy.

Annie did have two follow-up appointments on Monday.  (Sorry for the delay in posting--I clearly don't have as much time to post updates right away now that I'm not just sitting in a hospital room!)  On Monday we met with the GI doctor, as well as the pediatrician.  The GI seems positive that Annie has a chronic underlying issue such as Crohn's, Inflammatory Bowel Disease, or an autoimmune deficiency disorder.  We get the impression from him that we have only yet begun a very long-term battle with bowel issues. He has scheduled Annie for a full colonoscopy on the 16th to get a complete look at what is possibly wrong.  We continue to pray that he doesn't find anything, other than signs of her bowel recovering from a severe case of infectious colitis.  He wants Annie to stay on all her extra medications until after he learns more from the colonoscopy, then he'll decide which medications she needs to stay on longer-term, as well as how long she needs to stay on her specialty formula.  While he's in there doing the colonoscopy, he said he'll also look more closely at the pseudopolyp he found several weeks ago, and may possibly remove it. The pediatrician left us feeling a bit more optimistic.  He did Annie's pre-op and gave her a flu shot and pneumonia vaccine, although we're not quite sure how effective those will be since she's taking prednisone.

So Annie won't be returning to school or church until we learn more, since the prednisone is suppressing her immune system and an illness could cause more c-diff issues and would also push back her colonoscopy date.  So she'll continue on her same drugs and diet until we learn more from the colonoscopy, and just hope the Ativan continues to give her (and us) some sleep.