Wednesday, December 22, 2004

Pyloric stenosis

Generally, when the chief of neonatology escorts you into an empty room, nervously taps his feet and repeats, "Just remember, I'm your friend," you know he's not going to be asking about the cafeteria food.

We knew today was coming. It was the reason we've been a bit circumspect lately on the blog.

Today, we were offered the choice of discontinuing life support for Will. We chose life.

Only the timing was a surprise. The decision has been looming for some time. Doctors initially had hoped to delay any serious discussion until after the holidays. All along, we'd thought the choice would be whether to perform a tracheostomy or discontinue support.

As usual, the little guy had other ideas.

For the past several weeks, Will has been spitting up. That alone is a concern because he has a feeding tube that goes directly into his intestines. There shouldn't be anything left in his stomach to regurgitate. Last night, Will began vomiting dark blood, which is indicative of an ulcer or irritation of the stomach lining.

X-rays revealed that Will has pyloric stenosis, which isn't wholly uncommon in newborns or children with Cornelia de Lange. Basically, the valve leading from the stomach to the intestines -- the pyloris -- narrows, making it harder for the stomach to empty. That causes projectile vomiting.

It's corrected by a one-hour surgery that cuts open tissue to widen the hole. Normally, the decision to have surgery is automatic. Nothing with Will is automatic.

Will is a very sick little kid. He's a sick little kid who's been on life support a lot longer than he should be, and who gets sicker the longer he stays on it. And he's a sick little kid who, when he gets off the ventilator, will still face a million challenges.

Doctors extend life. It's what they do, so even broaching the subject of discontinuing life support is a dire sign. Almost no families get the choice. We're the first all year at Beaumont Hospital, which treats more than 800 preemies a year. Will's prognosis is that scary.

We knew the choice was coming and agonized over it. The ventilator is a double-edged sword. It extends life, but also increases chances of cerebral palsy, infections and damage to other organs.

You want to do the right thing for him, but don't know what it is. You wonder if you're selfish by prolonging suffering. You wonder if you're making yourself feel better by making him feel worse. You wonder if you're extending a life of constant pain. You wonder whether giving him more time helps him or helps you.

In the end, though, all we ever had was wonder. And questions. Doctors still can't tell us if Will has a mild or severe form of Cornelia de Lange, whether he'll be able to walk, talk, swallow, hear or eat solid food.

That's an awful lot of variables for such a big decision. Some things are certain. We fall in love with Will more every day. His big eyes and busy arms tell us he's got a lot of fight left. He deserves a chance, and we'll never look back and regret giving him one.

It's really that easy, so when the choice came tonight that we'd dreaded so much, there were few tears or discussions. Do the surgery. Fix the pyloric stenosis. Keep him alive.

So on Monday or Tuesday, Will will have the first of what probably will be many operations. Hopefully, it will fix some of his gastrointestinal problems. It could even improve his respiratory problems and allow us to avoid a tracheostomy altogether. Maybe it won't. We owe it to the little guy who's given us so much to try.


Anonymous Anonymous said...

We'll surely be praying for a fast and successful surgery! Hope you all have a wonderful Christmas together. Love, Amy

2:55 PM  
Anonymous Anonymous said...

Still thinking about you daily and sending prayers your way. Keep on loving each other, and have the best Christmas that you can.

Love - Deb Charlesworth

8:45 PM  
Anonymous Anonymous said...

I continue to read what you both so graciously share with us every chance I get. I, maybe like others that are reading, have no idea what to say to you both. I am afraid of getting into cliches, saying the wrong thing, or not being able to say anything that makes any sense. But I figured it was time to get off my a** and say SOMETHING, cliche or not, wrong or right, it does come from the heart. So I am not going to be a chicken shit any longer.... you need to know how many people are out here rooting for your precious Will Henry.

Your love for your son comes across so poignantly in your writing, it almosts hurts to read it. I can not imagine what is like to write it. But you do and for that so many of us unamed are grateful. You have allowed us to get to know your son for the unique vibrant soul he is.

Mo, I think you know I am not a religious person, but I can't help but compare the baby Jesus to your very own Will Henry. How amazing to know that there is another baby whose birth and first days could be so inspirational and such cause for joy. I hope you both find peaceful moments with your very precious Christmas gift, Will Henry Kurth, who really IS everyone's favorite 4 pounder.

Much Love,
Debbie Ajini

9:15 PM  
Blogger The Pretty One said...

My nephews born pre-mature under 2lbs each, survived and are doing great. Both were in the hospital for 2 1/2mths before bing released. I hope your son has a quick and healthy recovery,so you can get him home and start living the life you intended.

6:20 PM  

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