Most Hirschprung's disease patients have a very small section of colon right at the end that doesn't have the proper nerve function required to signal the body to push poop out. It actually spastically contracts to hold the poop in, therefore creating a blockage all the way up the entire intestinal tract. I could use fancier words here, but let's face it we all do it and it's just what it is people. So anyway, there is no way to tell just how much colon is involved until they get in and start doing the progressive biopsies.
About 2 hours into the surgery we got a call in the waiting room that they had sent the biopsies and were waiting for the results. About 15 minutes later in walks Dr. Aiken - can this possibly be good? The surgeon himself leaving the OR, not the scrub nurse that we were told would be giving us updates, but the surgeon. I have to admit, I was worried. He took us into a consultation room and broke the news that Malachi was anything but a typical Hirschprung's patient. His colon did not return normal function until all the way up the right side just as it's about to turn the corner and head across the belly. We were prepared for this, it meant a colostomy bag and further surgeries when he's older with an incision. I took a deep breath.
And then he says, "But I still think we can take care of this for Malachi today. We can continue with the pull through surgery (meaning they cut out the bad colon and pull the good through and attach it to the rectum) and get him all fixed up today. We have not done this before. It will take longer because we have to maneuver around a lot more, with quite a bit of dissection in order to make a path for the colon and it's blood vessels. We will have to make judgement calls along the way, but I think this is the best thing for him. The only thing I am not sure of is if I'll need to make an incision or if we'll be able to do it laprascopically." Wow. Okay, we trust him completely, and off we were to wait for who knows how long while they play a sort of puzzle game with our baby's insides and try to get things repositioned so he can have proper bowel function without a colostomy bag.
They did it. No incision, no colostomy bag. My baby has three tiny little (3mm) incisions on his abdomen and a bunch of sutures stitching the good part of his colon to his rectum. Looking at him you'll never even be able to tell he had surgery. Not that I would have cared if there were a scar, it's the longer recovery time, risk of infection, and overall risks of being cut open verses some little cameras and ity bity tools inside your belly, that's what I am glad we avoided.
They've never done it before and now they know they can. Recovery is expected to be a bit longer because so many things were moved around to make a path for the colon, making sure the blood supply was not disturbed, and there was much more dissection than the typical cases.
After the surgery Dr. Aiken came out again and gave us all the details. At one point he said, "If God was going to give Malachi Hirschprung's, I sure would have appreciated some longer blood vessels to work with." He said it with a big smile and for some reason it was so comforting to hear him say.
You may also be curious to know that this is a hereditary disease. It can skip many generations at a time, is most often carried through the mother, and most often affects boys. Our chances of having another baby with Hirschprung's goes up to 12% after having Malachi, that is if it's a boy. If it's a girl, it would be like 3% or something, ask Sam he's the math dude in our family :)
Further update, Malachi still has the tube to drain his tummy, that's the first milestone we are waiting for - that to be gone. He still hasn't pooped, we were really hoping for that today. We sit and wait and hope and pray and smile and just bask in the giant spirit of this little one, this angel messenger of ours. I can almost taste the moment when we get to bring him home, and it makes it hard to wait. He didn't complain about his measles shot too much. Daddy held him and snuggled him through it. I just can't wait to be all together at home.
2 comments:
Keep hanging in there you guys!! He's a trooper, that's for sure.
Never imagined saying anything like this, but PRAYING FOR POOP!!!
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