JollyRoger
Shared on Wed, 07/25/2007 - 11:15We had an appointment with Megan's GI doctor yesterday. It was her normal check-up just to see how things are going. Unfortunately her weight is not good at all. She has lost 5 more ounces and is now back down to only 16 1/2 pounds. He is giving her a month to get her weight back up or we will have to make some drastic changes. They would not be good so we need to pray that she can get her weight back up. She just doesn't seem to be able to absorb her food again. She is still having awful diarrhea so he is adding something to try and help with that. So far today is not a good day for her. She is not feeling well at all and is very tired. I am trying to get some extra pedialyte in her because of the diarrhea. Her GI doctor did say yesterday that she was very uncomfortable in her belly. Not just from the tube but in general. There wasn't a place on her tummy that you could touch that she didn't just cry and say "ohhhh", it was so sad. I asked him if all this was because of her disease as well and he said yes. We just have to keep trying things until we find something that will work, for a while anyways. That is why, he also said, he will not take her off the 24 hour drips again. There is no point in taking her off only for her to start having problems again. It is just too hard on her little body. He said that he knew that we wanted her to have some free time but she can't handle anything more than just the drip. It has always been that way but before we didn't know what was going on with her. She would get better and we would start trying bolus or at least increasing the rate to give her 4 hours off only to have her not tolerate it and making her sick. Now that we know she has a mito disease it makes more sense. At least she is able to somewhat tolerate the drips. Praise God for feeding machines!!! Seriously, we are so thankful for it because for children like Megan this is a huge deal. There are many children with mito that cannot even tolerate the feeding tube and are on IV nutrition only. It is possible that could be in Megan's future but for now we are just thankful for the tube. Well, I guess that is about it. Time for another diaper change for Megan. Her poor little rear end is so red. Thanks guys and love to you all!!
Stacy
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JR
Stacy
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JR
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Submitted by ekattan on Wed, 07/25/2007 - 11:26
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