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.



10 thoughts on “Waiting

  1. I totally agree with you Julie. You have been patient and now need the answers . The unknown is the worst so hopefully things will go ahead today. Our prayers for the best outcome . She looks so sweet in that big bed and doesn’t look like it’s bothering her too much. Guess she knows Mommy is doing all the worrying. Keep us posted. Hugs and prayers.

  2. Oh Julie, I can’t even begin to imagine what you are going through but I hear the worry in your words. If prayers make a difference then please know that my prayers are being said this very minute. I want them to give you answers and solutions. There has to be something the doctors can do …. and soon! Waiting is always difficult. Penelope is such a sweet little girl and it breaks my heart that both you and her are going through this. Hang in there Julie … you are not alone. You have so many people who love you and support you. Love, Aunt Barb ♥

  3. Thinking positive thoughts for you and Penelope. Hoping you get your answers and she is on the road to recovery and going home soon 🙂

  4. My heart goes out to you and your family. Sending lots of love your way. As I type this my eyes are teary and I hope everything is okay for your baby girl. Take care!

  5. Oh Julie, my heart breaks for you. I could never imagine the torture you must feel. I hope and pray you get your answers today. Sending lots of love and squeezes to Penelope, you, Mark and miss Charolette. Let me know if I can help in any way.


  6. Julie, I can only imagine the torture that you all are going through. I hope you get answers soon my friend.

    You have every right to want to get this solved as quickly as possible.



  7. Dear Julie,
    We can say ‘we understand how you feel’ but we don’t. No one can understand a mother who is suffering the way you do.
    Your strength for Penelope will give her strength to fight and get better.

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