On Friday, Penelope was admitted to hospital. She has been struggling for months now with loose stool and weight loss, and she had reached a point where we could no longer haphazardly try strategies at home to fix it- she needed medical management in hospital. I had feared for awhile that this is where she was headed.

Since Friday, the team at the hospital was able to rule out infectious causes for this problem, and so the next step was going to be endoscopy and colonoscopy to try to visualize any problems. The doctor was also going to take some tissue to biopsy to see if that could tell us anything. All of this was supposed to happen on Tuesday. They added her onto to the OR schedule. I was up bright and early on Tuesday morning, anxious for all this to be done so we could hopefully get some answers, and I waited for her to be called. I waited, and waited, and waited… and at the end of the day, the doctor came and told me she had been cancelled for the day and he hoped the procedure could take place on Wednesday instead.

I was crushed. Devastated. Hysterical. I know this may sound like an overreaction, but it is torture to be confined to a teeny hospital room, with a child who hasn’t had any nutrition since midnight, who has faded away before my eyes; waiting for an answer, only to be told, “Sorry! No answers for you today! Maybe tomorrow!” I am well aware that the reason she would be cancelled is because there are other kids out there who needed the OR more urgently- kids with parents and families who are beside themselves with worry. I get that. But all of this brings back the memory of waiting for her to get her brain MRI. I waited for weeks, all the while being told that she seemed fine, it wasn’t urgent, and I shouldn’t be so worried about it. And after weeks of tortuous waiting, she had the MRI- and it was abnormal. Those results, coupled with the subsequent genetic results, changed the course of our lives, and it was a devastating blow. And now I feel like I am reliving that time- hearing over and over that I shouldn’t worry so much and that this isn’t urgent. It is urgent to ME. I just want my sweet little peanut to be okay.

And so I am hoping that the waiting isn’t for naught today. I just need some answers. I want to get her home and get her better. I don’t want to wait any longer for that.