Wednesday, May 18, 2011

T- 36 Hours, and Counting

We met with our surgeon today, and all systems are go. I was quite pleased with his manner of being very informative and still treating us like we were capable of making the right decisions for our son. After a brief rundown of the different ways to perform the procedure and the different types of buttons, we made our decision.

We have opted to go for a traditional incision placement rather than a scope, due to the type of button used and a healing process optimum for our VERY active little guy. The Mini-One Balloon button isn't available to us, but the one we opted for is a lower profile model that is very similar, only it has a rounded plastic anchor rather than a water filled balloon to hold it in place. It is a bit more challenging to insert should it break or become dislodged, but we will be able to move to a Mic-Key or a Mini after the stoma heals in a couple of months.

Surgery is scheduled for Friday, most likely in the morning. Tomorrow the hospital will call with pre-op instructions, such as when to arrive and how long before we come in he should abstain from eating and drinking. If all goes well - and we have every reason to think it will- we will check in on Friday and out on Saturday. Things will be significantly easier without the addition of the Nissen surgery.

I thought I had worked through all of my emotions about this, but was hit with a little wave of unexpected sadness when we left the office today. In spite of all the reasons to do it, and the fact that we are ready to move forward for J's sake and our whole family's- it's still there.

I began to think about how sad it is when your baby goes under anesthesia and you have to leave them alone. I remembered how he cried when he saw me after coming out of his Fentanyl haze after his Bronch. I remembered the woman in the waiting room with us that day who sobbed uncontrollably the whole time we were sitting there and how I couldn't even imagine what her child was there for. I thought of the dozens upon dozens of needle sticks and how impossible it is to get an IV in J and how much he hates being held down. I thought of my dear friend whose daughter recently had her tube placed and how she says it pains her to have it tended to as it heals. I wondered sincerely how we will keep this thing from becoming a tangled, hazardous mess when he roly-polys around in his bed all night. I also thought of how he has now not gained weight for half of his lifetime. I remembered, most of all, that this is what CF is. A constant reminder of pain and mortality in the face of a happy toddler. A fight that is ingrained in who we are but we cannot let wholly define us. A reason to embrace every single minute pleasure we can glean from each other. A horrible thing that has brought people into our lives that I don't want to imagine life without (yes, you!).

And so for a moment, I finally let all of these things wash over me, and decided to share them. Ultimately, this is not about me. But as mama, I must make the call. And I am ready. And I am so grateful to live in a time and a place where things like G-Buttons are available to improve our quality of life, and all the people I connect to are available at the click of a mouse (or touch screen).


  1. Amy, I love how you invite your fears in the door, look them in the eye, have a little chat with them over a cup of tea (or a glass of beer!)...and then send them on their merry way. You're amazing. Will be thinking of Jackson and all of you on Friday! Luvya! Nani

  2. You have great courage and strength. Thanks for sharing your personal story with us and other CF moms. I think this post relates to all the fears we face as having children with this disease. I will be thinking of you and Jackson on Friday. Hugs to you both.

  3. The JUJU light will be flickering all day for J, you and your amazing family. Lots of love x