(My maiden name is Farr)
Charlotte had a busy, busy week last week.
For reference, Charlotte had her GJ tube placed initially on March 1. By April, she had to have it replaced three times. We went in on Tuesday for her fourth replacement. At this point Peter and I were pretty sick of this contraption called a GJ tube. Her nurses hated it. We would have gone back to the G tube button if not for the fact that Charlotte's doing a lot better with the feedings going into her jejunum. Darn kid and her medical needs.
So yeah, Tuesday I made a plea to please, please, please place a button. They smiled and nodded and politely said, "Umm, no." IR said GI wouldn't let them place it and GI said IR wouldn't do it. So I walked on down to GI and said, "IR will place the button if you will sign off on it." They weren't too happy about it, (CHOP wants all babies with a GJ button to be at least 10 kilos, Charlotte is 9) and they went into all the horrid things that could happen. The problem is, Charlotte is getting a nice ol' dose of radiation about every two weeks at this point. I'm willing to take my chances. Plus, I know a few 9 or 10 pound babies (pounds... not kilos) who have the GJ button. I'll try anything at this point.
On Wednesday, IR called and said the next time Charlotte needed her tube replaced, they would try the button. Charlotte apparently heard this because Wednesday night she yanked that thing right out. Yupp, twice in three days. Awe.some.
We had the button placed on Friday and so far, so good. We're really, really, really hoping this works better than the PEG/NG tube combination.
Charlotte also had her eye exam on Friday. Last time we were there, the eye doctor was shocked at how good Charlotte's vision appeared to be. After a child experiences retinal detachment, the assumption is that they will have significantly impaired vision. At her last appointment, Charlotte was not even showing signs of being near sighted (the typical problem for children with ROP). At this appointment, Charlotte tested being a little far sighted. The eye doctor felt that this is probably the "normal" far sightedness that most children experience. However, once she starts moving (crawling, rolling, or walking, whatever comes first) her vision might make things a little more complicated. So he's keeping a close eye on her (haha) and referred us to a good ophthalmologist in San Diego.
Oh yeah, Charlotte stopped breathing last night. It was awesome. Yay for Ambu-bags. {She's fine, she just had a severe apnea event. Reminds us that the CPAP really is important for her}.
And that was our week!
Sigh.... It never ends, does it? I am crossing my fingers for a long round of boring for you guys. But I am glad to hear that she is doing better with the GJ feeds. By the way, guess who's not 10kg yet at two years old???
ReplyDeleteWell, we all know that Charlotte is one smart cookie. Of course she knew what she had to do to get that button!
ReplyDeleteWe have a Bard button and not the Mic-key. There are pros and cons of both I guess. She can't pull out the Bard, but it doesn't lock, leading to possible spillage.
B sees an opthamologist here for her extreme far-sightedness. I can email you with the name if you would like, although I can't say that I love him. He was the one who made me worry needlessly about possible genetic disorders. We see him again on Friday, so hopefully he won't give me any other disorders to look up on the internet.