The Fear of Hope

Labs were drawn this morning and her white cell count is back to normal. Her ostomy is working and everything seems to be fine. They have done nothing for her since we’ve been here, no meds, nothing. Everything resolved on it’s own……

We were taken down for a study where they injected contrast into her stoma and watched how it went up through her small intestine. The only place they saw narrowing that could be causing problems was near the stoma site. Same place it always looks questionable even though we’ve had two revisions. Normally when we have a contrast study done it dumps back out quite a bit within an hour after but today it didn’t. I watched and waited and finally inserted the catheter and it came pouring out. That’s pretty consistent with what they showed on the screen today. Disappointing that even without feeding her, her body can’t even get basic bodily fluid through on it’s own.

I spent the last week telling people how great she is doing. Teachers, therapists and nurses all commented happily on how the “old Laila is back.” It has been almost a year since I truly let myself believe that she might actually be ok. It scares me. Hope is a scary thing for me. I self protect and try to think I have everything figured out and prepare myself for the next challenge so I won’t be disappointed or caught off guard. I got one week of joy and I’ve gotta tell you, this sucked. Letting myself believe that the TPN had given us some relief and that we may stay out of the hospital and then being back here one week later, wow. I HAVE to focus on the positive and that even though we have these hiccups and we will still struggle that we are still doing the right thing. She is still getting more good days than she had before.

I was reminded by a friend that even though Laila’s body is a mystery to the doctors and to me, it is not a mystery to her creator. That is very comforting. I pray for insight and wisdom but most of all peace in what I can’t control or figure out. I want to have hope. I want to so much. I also know that no self preservation mindset or planning on my part will ever dull the pain that will come one day if we lose her. I have to hope for better days while also enjoying one moment at a time. Just have to figure out how to do that.

At this point we’re just waiting for the doctors to read the study and decide if they want to do anything different. There is talk of going home today but also that they might keep us until the blood cultures come back tomorrow.

She’s currently just hanging out playing “Crystal” and pretending she is the Wheatfield Elementary secretary :) “Hewwo! Dis is cwstal from Wheatfield Elementawee”