Saturday, October 16, 2010

31 for 21, Day 16

Update on Nate's Appointment

Well, we met with the gastroenerologist and the surgical team on Wednesday. The good news is that Nate does not have Hirschsprung's disease. The bad news is that Nate does not have Hirschsprung's disease. Why is that bad news? Because it means there isn't a definitive answer as to what is going on.

Dr. Rossi from GI is at a loss. Based on all the tests we have done, there just isn't an answer from a GI standpoint. He said there is one more test we can do but we'd have to go to Boston for it and in his opinion it probably won't show us anything different.

Dr. Pegoli is the surgeon. He believes that Nate's constipation issues are neurological. He thinks that there was probably neurological damage due to Nate's extreme prematurity and intracranial hemorrhages after birth. It is obvious by Nate's extreme developmental delays that there are neurological problems. We had no idea that they could also cause issues with his colon and bowel system. It makes perfect sense but it just wasn't something we had thought about.

So what does this mean? Dr. Pegoli says we have two options at this point. The first option is to continue doing what we're doing and see if eventually Nate will be able to have a bowel movement on his own. The problem with that is not knowing if or when it will happen or how long it may take.

The second option is a colostomy. This would give Nate relief now and may allow his colon and bowel system time to recover. The colostomy would not necessarily be permanent and, as Dr. Pegoli stated, "it wouldn't burn any bridges." In other words, we could eventually reverse it and start over to see if Nate could go on his own.

At this point we are simply not sure what to do. We are going to try giving him large amounts of Miralax again to see if this will make any difference. It hasn't really helped in the past but Dr. Rossi says it is worth a try.

I was really prepared for them to tell me that Nate has Hirschsprung's. If he did, the colostomy would be absolutely necessary and not just optional. The thought of having to put him through a major surgery is daunting.

Right now we are going to pray about it and try to make the best decision for Nate. Please continue to pray for him and pray also that we will make the right choice.

1 comment:

Deanna said...

Hello - To be honest I followed your blog a while back and recently stumbled again. We have adopted kiddos as well some with Special needs. The youngest Samuel age 3 who is unable to crawl or even sit unassisted. However, he blesses us daily. I have a friend who had many bowel issues with her daughter .. Miralax did nothing. Have you tried using Senakot a natural vegetable laxative she now keeps her daughter on a daily dose and all systems are a GO! Just a thought - we have used this with our adult daughter when she gets constipated and it fixes everything.