Bracing for the Big Step: Jejunostomy Reversal

Well, the jury is in. Our Frankie boy is headed to the OR this summer for his ostomy ‘takedown’ surgery which will restore the normal continuity of his digestive tract (we hope). We really don’t have a good idea of how anything below the jejunum looks. We just know it was matted, scarred, and had so many adhesions, they could not get a good look the last time.

I was heartbroken a few weeks back when his surgeon told me that there would be no purpose in doing his takedown surgery and putting him back together if we didn’t know if the bowel out to his ostomy would absorb anything and that he would have to tolerate at least 1ml an hour of milk for the surgery to be worthwhile. Even then, I thought maybe I could get our boy home this summer if he could tolerate the milk and we’d do a mixture of TPN and enteral feeds at home. But as the discussion continued to evolve, it became clear that the right choice for Frankie’s long term health was to operate this summer.

Children aged 2 and under are best equipped to tolerate enteral feeds. After that age, it becomes extremely difficult for the body to adapt to eating again. If I took him home this summer and spent 6 months at home with him, we’d be so close to 2 years old and we still will have a lot of work to do post surgery to work up on feeds. They also presented that if we did enteral feeds for 6 months, while that is great that his bowel out to his jejunum is practicing absorption, the entire lower portion of his system is not. He could end up with reconnection issues due to sizing since one part is doing work and the other is inactive for so long, or the lower part could lose a lot of function or even become necrotic.

So, we painstakingly made the decision that we are not going home this summer and we are instead headed to the OR. I’ll be meeting with his surgeon on Friday to discuss the OR date (likely June) and recovery plan. The best estimate I’ve been given is roughly 12 weeks acute recovery and then probably several more months working up on feeds and discharge planning. I’m hopeful to be home by around the new year.

Here’s what to celebrate: I bawled my eyes out thinking about feeding this baby after almost losing him twice during feeding trials — and he is rocking 24 continuous hours of milk on a pump like a rockstar! I was terrified, and his eyes said, “Mama, I got this. Just watch me!” I negotiated to scale up his feeds and not start at continuous like they preferred. He does still puke a bit and gags some but overall he is tolerating it incredibly, and we did expect these reactions after not having any food go through his stomach for months. He is still on his home vent 24/7 on very low oxygen requirements, is still playing and doing his therapies, smiling and laughing, and being our sweet Frankie.

We’ve got some scary days ahead. I am hopeful this surgery will be at least a little easier for him than the previous. We almost lost him from blood loss last time. He was losing it faster than they could replace it. He is the strongest boy I know. The guy has grit you’ve never seen. He gives me strength every day to advocate fiercely for him and his brother.

Now about our Henry boy. This little one has been teething for what seems like forever but it sure seems to be getting him now. Between that and his first ear infection, he’s keeping us on our toes. We had his appointment at Shriner’s to check his leg length differences. Boy did he hate having his xrays done. They confirmed his bone length has a difference of 1cm which should not cause him pain. They will see him annually and if the difference increases to 2cm or more, they would consider surgical options when he is older. They believe 2cm difference or greater does cause pain.

Henry had an incredible time at our mother’s day celebration with his cousins. Cousin Tom installed a swing for him and his entire face was beaming! He tried a hot dog for the first time and thought that was wonderful.

The basement project is almost finished. Although Frankie won’t be home as soon as we hoped, I’m still grateful for the functional space and excited to get things set up down there.

I’m happy to be on the tail end of the recent yuckiness that we seem to get from Henry’s day care. Henry, myself, and my mom were all on amoxicillin for a bit there. It broke me to not see Frankie for several days while I was sick. Grateful for our health, including Frankie’s — he’s doing so well, and all of your support and love.

Amanda