Archives for the month of: July, 2016

A growing pump and bag collection.

Grace has her pain meds on board and is resting comfortably. So far she has no real desire to be awake for more than a few minutes. She has a low grade fever that is being watched but also not uncommon post op.

The surgery went well and our Urologist is very pleased with the entire procedure. While Grace has an abnormally large bladder the doctor stated it is a beautiful bladder that did not require any augmentation as it was smooth on the inside which prevents pockets of urine from remaining that could cause UTIs. She ‘tacked up her bladder a bit’ to help with an easier cathing through the Mitrofanoff that was constructed, it is a marvel we can move organs around like that.

During the operation they checked out her kidneys which are good; we didn’t have any concern and the tests have been normal but they had an opportunity to complete a visual check.

The Mitrofanoff is created by reusing the appendix to create a channel from her belly button to her bladder that we will eventually be able to insert a catheter through.   Not only does Grace have a beautiful bladder but also a long appendix that allowed for it to be placed in exactly the place it needed to be.

She has started back on a small amount of formula and will continue to increase as she tolerates the feedings but it will take some time.

Grabbed some lunch from a neighborhood café where we got some the Harold & Kumar Poutine which consisted of House Cut Fries, Pork Curry Gravy, Kimchi, Caramelized Onion, Parmesan, Cheddar, a Soft Poached Egg and Chipotle Aioli. It was quite good but I think it is fair to say that I enjoyed it more than Joy did.

That’s all for now, we will see what tomorrow brings.




IMG_9173Well, we are all through with surgery and Grace is as snug in a hospital bed as you can be in a hospital bed with tubes hanging out of you and poking into you.

Kevin and I have had pizza – and although we haven’t done much today we are pretty tired.

Even though she has had surgery before and I knew it would happen I hated the moment where they roll a bed with her on it away from you. I paced the waiting room once I knew she was out of surgery wanting to just get to her.

The surgery went perfectly. Everything went just the way they explained it to us.

We know Grace so well, and we made people listen to us a few times today so we could get her what she needed.

I think tomorrow will be harder then today. Tomorrow she will be more awake. They will give her less medication for pain. I imagine also that she will want to play with all the tubes coming out of her as well. This is not really advisable.

Thank you for the many well wishes.




IMG_8871Yesterday Kevin’s mom sent us an email about Christmas. Christmas seems so far away and I had a hard time wrapping my brain around it. That’s when I realized I have descended back into surgery mode. Surgery mode is about making it through the next few weeks.   Nothing beyond those weeks factors in. I’m planning for those weeks, preparing however I can. Surgery mode is complicated by the outside world which has given us a new nurse and a new speech therapist. ( I can’t even think about not having our old speech therapist- too many feelings). Emails from school are starting to come in – transportation, school supplies. I have more responsibility at work. And although not part of the outside world we have two kids. Graham is four, he fights bedtimes and asks questions about why dirt is black, why someone would want to hurt a policeman, and why we go to heaven twice.

I’m mourning the loss of Grace’s stomach – soon it will look different some kind of medical thing will be there. I worry about how it will look in a leotard for dance. I worry about the surgery. Will it go well? Will it not? Will there be leaking when it’s all done? Will the surgeon be having a good day or a bad day? (She’s just a human.) I worry about Grace. How will she handle it all? How will we know what she needs? I worry about Graham. How will this affect him? How do we make sure he knows we love him when his sister is taking us away from him? I worry about Kevin and I. Will we be able to juggle everything that needs to be juggled?

I’ve enjoyed our reclaimed summer. We did family vacation bible school. We had dinner with friends. We went to fireworks over the fourth. Graham is still talking about a firework that went a bit crooked and landed in a tree not far from where we were. We’ve swung outside. We all went to Farmer’s Day and rode the ferris wheel. Grace and Graham both took summer dance classes. We checked a few things like sparklers, Trainland USA, and frozen lemonade off our summer list. We did it all able to keep surgery mode at bay, I’d thought. I know now I was fooling myself a bit. In all that time we were regularly taking samples to the lab. They all came back fine. We were making new plans to be gone 3-10 days. We were also hedging our bets that it could actually happen this time.

A week from today she will have the surgery. Our last lab checked out fine. History and physical tomorrow and then technically nothing can stop us. One day at a time will get us through.   There will be moments of panic- plenty of planning- hopefully some good rest – worry- but we will make it. The world doesn’t stop – but we can carefully determine how we keep up and what we may need to let go for just a bit.