Tuesday, July 17, 2012

This morning I drove up to Primary Children's hospital to take Noah to his surgery consultation appointment. All along I've been saying, "He has his surgery in August and we'll be good to go!"...I was brought back to reality today.

His surgeon sat us (Kerri, my MIL came with me) down and said basically "this is going to be tough...Noah is a healthy baby boy now and sure, you've had to deal with his colostomy, but because his transition zone is higher than the majority of Hirschsprung's patients (a bad thing) he runs a higher risk of getting enterocolitis. He will have diaper rashes like you've never seen before. And he may struggle with incontinence his whole life. You'll have an extensive regimen of dilation and washes that you'll have to follow for some time after surgery to help him learn how to feel the sensation to have a bowel movement."

Now, I knew about all of these things. It just hit me harder hearing it officially from him and not just reading things online. It will be a journey. I will have to stick rods up Noah's bum several times a day and give him "washes," or enemas often. I don't know exactly how long we'll have to do that, but a mom that I talked to did it for a year. He may potty train much later than average, he may not. Every case of Hirschsprung's is different! The unknown is what kills me. But I'm really grateful his doctor didn't sugar coat anything and that Noah is such a strong, resilient kid. It would just break my heart to see him have an accident when he's older. The ultimate goal is to get him trained and figure out which foods he can't eat so that those things don't happen.

1 comment:

  1. Amy, I am feeling for you. What a hard process! I'm sure it helps to know that every step of the way is helping Noah and will make life easier for him in the long run, but that unknown factor is killer! You will do great. Mark will do great. You are great parents, and Noah will thank you for it someday.

    I CANNOT WAIT to meet him next month! I'm coming to Utah at the time of Jordan's wedding (with Jude). There are so many family members I have yet to meet! Noah, Robby, Nico, Reginato, Scarlett, Paisley, Doug, Eldis...are there more I'm forgetting? Anyway, can't wait to see your little family. Good luck with everything following surgery.