So the Internet is still giving us fits (someone is coming to the house today to check things out) but we wanted to give a quick update on what was found on Wednesday with Charlie's scope procedure. So they took a camera and went down his esophagus, into his stomach, and peeked into his intestines. The results look fine. They found no inflammations, ulcers, or places that were getting bothered by his acid reflux. So that is good news. They took several biopsies to test for things, but they don't expect to find anything. They were unable to test the motility of his stomach during this procedure unfortunately.
So they think that his stomach might just be too immature to handle his food and that he needs to grow and get older. They told us most likely to expect a surgical feeding tube to be implanted within the next few weeks. So at least we can start to prepare mentally for that. We have read stories that CDH kids may need feeding tubes for quite a while. Does any CDH parent have experience with such a feeding tube? At least this will mean he will have nothing on his precious little face :-)
So we are doing well, and Charlie is doing great...he is just so strong...just needs to learn to eat and get a little more mature! That's it for now...talk to you all soon!
2 comments:
That is good news that doctors did not find anything wrong, but still leaves you with questions on his feeding. If you ever have questions about the feeding tubes, there are many parents at CHERUBS whose children have had the G-tubes and can offer great advice and their experiences. (www.cdhsupport.org) Charlie is always in my prayers.
Hugs, Tracy - Ian's mom from CHERUBS
Hello Vince and Patty,
I've been checking in on your blog occaisionaly, hope you don't mind. I just can't get enough of the other CDH babies.
My daughter, Emily, was born 1-22-08 at Cincinnati Children's with a left sided hernia. She was very sick, but her doc's kept her off ECMO. Surgery didn't happen until 6 weeks, and she was intubated until April 8th. I was told about oral aversion, but didn't believe this would be a problem. They were right. Since she had the tube for so long, along with other negativity in/near her mouth, she's been unable to have pleasurable oral experiences. No nursing, pacifier, no bottle. She had a fundoplication and G/J tube placement on May 1st. It's almost been 1 year now. It is sometimes upsetting to know that my baby can't eat orally. When I see other baies/toddlers with bottles or finger foods I do have moments of sadness and frustration. But most of the time the g-tube, now Mic-Key button is just part of 'normal' everyday life. I could go on and on, but the point is that this is a temporary measure, and it sounds like it would also be temporary for Charlie. He can get the nourishment he needs while giving his body the time it needs to heal and grow.
Feel free to contact me if you'd like more of our experiences.
You have a beautiful boy who will overcome this obstacle with time and love from his wonderful parents.
Sue Kozik
mkozik67@comcast.net
www.carepages.com/Emilyishere
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