JollyRoger
Shared on Thu, 10/04/2007 - 08:3810/2/07 Update:
I apologize for the double update but just wanted to let you know that I talked with her GI doctor. He advised that it would be better if we went ahead with the GJ tube into Megan's tummy. He said that he agrees with her Mito doctor and does not want anymore stress put on her body than neccesary and anything we can try and do to keep this disease from progressing, we should at least try. He said Megan is very unpredictable and he would rather go ahead and do it now than wait until things got really bad and have to do it on an emergency basis. For those of you who are not familiar with a GJ tube, this will go in the current hole in her tummy but it will bypass the stomach and go directly into her small intestines. Since Megan has dysmotility and severe reflux along with the fact that she is sensitive to just about anything in her belly, this will hopefully give her belly some much needed rest. One concern is that if she is able to back it up into her tummy (which she did when she had her NJ tube, but before her tummy was tied off) then we could face some serious problems. Also, this tube can become dislodged, therefore you have to make an immediate trip to the hospital to get it fixed. You also have to remain on a 24 hour drip with no availability of coming off as they cannot be on bolus feedings with a GJ. That is not a problem for us only because Megan is already on a 24 hour drip. He is pretty sure she is refluxing and after the tube goes in they will be increasing her reflux medicine significantly. This will hopefully provide some relief as well. The good and bad about this is that they will not have to put her to sleep, the bad is that they will not put her to sleep. She really needs to avoid being put to sleep because of the Mito disease but we also know it is going to be hard on her having this done. Anyways, that is about it. Jim and I are a little nervous because we just want to make sure we are making the best decision for Megan but we know there are risks either way. This is so complicated! So we are praying for complete peace about this. Thank you guys and we will let you know once they have a date scheduled for her procedure.
10/3/07 Update:
Tomorrow Megan will have surgery to replace her current tube with a GJ tube. He wasn't kidding when he said he wanted it done right away. Please pray that everything will go well tomorrow and she will not be in too much pain. Thank you so much and have a blessed day! Love you all!!!
So, yes, we visited the doctor and got an appointment for the next day. This is the fastest they have ever gotten us in. I was quite impressed.
So, say a quick prayer around 12:30PM EST, the time of the procedure. And thank you all you continue to pray for us and send us your thoughts. Take care and God bless.
END OF LINE
JR
I apologize for the double update but just wanted to let you know that I talked with her GI doctor. He advised that it would be better if we went ahead with the GJ tube into Megan's tummy. He said that he agrees with her Mito doctor and does not want anymore stress put on her body than neccesary and anything we can try and do to keep this disease from progressing, we should at least try. He said Megan is very unpredictable and he would rather go ahead and do it now than wait until things got really bad and have to do it on an emergency basis. For those of you who are not familiar with a GJ tube, this will go in the current hole in her tummy but it will bypass the stomach and go directly into her small intestines. Since Megan has dysmotility and severe reflux along with the fact that she is sensitive to just about anything in her belly, this will hopefully give her belly some much needed rest. One concern is that if she is able to back it up into her tummy (which she did when she had her NJ tube, but before her tummy was tied off) then we could face some serious problems. Also, this tube can become dislodged, therefore you have to make an immediate trip to the hospital to get it fixed. You also have to remain on a 24 hour drip with no availability of coming off as they cannot be on bolus feedings with a GJ. That is not a problem for us only because Megan is already on a 24 hour drip. He is pretty sure she is refluxing and after the tube goes in they will be increasing her reflux medicine significantly. This will hopefully provide some relief as well. The good and bad about this is that they will not have to put her to sleep, the bad is that they will not put her to sleep. She really needs to avoid being put to sleep because of the Mito disease but we also know it is going to be hard on her having this done. Anyways, that is about it. Jim and I are a little nervous because we just want to make sure we are making the best decision for Megan but we know there are risks either way. This is so complicated! So we are praying for complete peace about this. Thank you guys and we will let you know once they have a date scheduled for her procedure.
10/3/07 Update:
Tomorrow Megan will have surgery to replace her current tube with a GJ tube. He wasn't kidding when he said he wanted it done right away. Please pray that everything will go well tomorrow and she will not be in too much pain. Thank you so much and have a blessed day! Love you all!!!
So, yes, we visited the doctor and got an appointment for the next day. This is the fastest they have ever gotten us in. I was quite impressed.
So, say a quick prayer around 12:30PM EST, the time of the procedure. And thank you all you continue to pray for us and send us your thoughts. Take care and God bless.
END OF LINE
JR
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