Monday, March 31, 2008

Bumpy, but smoothing out.

"They" said that the G-tube "may exacerbate reflux." They didn't say much else. Thank goodness for the Parent-to-Parent forum and all of the mothers with kiddos on feeding tubes who have answered my questions these last two weeks. These women know because they've lived it. According to these moms, it almost ALWAYS worsenes reflux - for 1-2 months while they get used to a new area of tension in their stomach. I have been dropping in on this forum so much lately... "Is this normal?" "Does your child's site looks like this?" "What does granulation tissue look like?" What in the world did parents do before web-based forums? Good lord, I would have gone crazy. As if it's not enough to try to get used the simple fact that there is a hole in your child's stomach.

Things are smoothing out now. We were able to catch the infection early and after six days of antibiotics, now have it under control. We've had to take a few steps back and do slow, drip feeds to try to increase Owen's tolerance of this new sensation in his stomach. This is normal in the world of G-tubes. He's probably lost a bit of weight the last couple of weeks, but again, all the P2P moms say this is common. We have a follow-up GI appointment tomorrow and hopefully we'll be able to discuss moving to the low-profile, mic-key button in June. I'll be glad to not have to accommodate the 6" long tube that's always present, like an added appendage, but on the opposite side of the map.



Sarah Ono knit a beautiful, wonderfully soft and silky blanket that we just received. I couldn't resist sneaking in on Owen while sleeping and immediately giving it a try.

I noticed from the photo that you really get a sense of Owen's lovely, red curls. Kelsey says that we are "not cutting Owen's hair." I'm inclined to agree. We'll keep you posted.

2 comments:

Jennifer said...

What a cutie pie! You guys are fabulous. Keep the blogs (and pictures) coming!

xoxo, Jen and Megan

karengberger said...

I feel the same way about the parent-to-parent forums for cancer, grief, etc. I am not comfortable going to alot of meetings, but being able to read, think, write and exchange information and ideas with other parents is so helpful. Sometimes I think it is like living in a tiny community within a community. The poeple who are walking the same territory really "get it," and they do not tire of the subject the way those who are not in our "community" might. I love being part of www.caringbridge.org and having a blog; both have helped so much!

It seems that Anne LaMott was right: someone, somewhere is having a good day, and you can usually get in touch with one of them when you aren't, or you can offer support to someone else when you are having a good one.
God bless your family!