you
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Post by you on Jun 8, 2017 5:34:13 GMT -6
Does anyone have experience with one? J eats regular food but has medical issues that are making him not eat well. He is under 16 lbs at 14 months. Born on his due date at almost 8 lbs.
They haven't gone over what we would be expected to do at home and I am a planner. We have a nanny. Would she be expected to help with this?
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Post by sheilathetank on Jun 8, 2017 6:18:52 GMT -6
I don't have any experience with this personally. Do you know if this would be replacing his solid food intake or just supplementing? Would you be able to use a transitions formula, such as similac go and grow, instead to bulk calories? I would think the nanny would need to know at least the basics of how to keep it clean and in place.
I'm so sorry for you and J with all that is going on.
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Post by littlelion on Jun 8, 2017 8:19:57 GMT -6
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you
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Post by you on Jun 8, 2017 8:48:58 GMT -6
We are just supplementing. He is eating regular food, just not a lot right now. It has been a dramatic decrease in the last couple of weeks. His weight gain has been a major stress for a year so I hope this helps him. The doctors are saying his liver is causing him not to want to eat so I hope the new chemo will be effective.
We saw a specialist in another state on Monday and he helped our doctors develop a new treatment plan. We checked J into the hospital on Tuesday night for a blood transfusion because his hemoglobin was low. The specialist wanted to rerun a few tests so we did that yesterday under sedation. He got his new chemo last night and will get it for five days. We can do future treatments in the clinic but the specialist wanted the first one in the hospital because his health isn't great right now and he is a baby. His doctor was going to do it in clinic but we encouraged them to admit us.
H is with him now and said he is tolerating the tube well and they started the feedings through it.
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Post by sheilathetank on Jun 8, 2017 9:58:40 GMT -6
We are just supplementing. He is eating regular food, just not a lot right now. It has been a dramatic decrease in the last couple of weeks. His weight gain has been a major stress for a year so I hope this helps him. The doctors are saying his liver is causing him not to want to eat so I hope the new chemo will be effective. We saw a specialist in another state on Monday and he helped our doctors develop a new treatment plan. We checked J into the hospital on Tuesday night for a blood transfusion because his hemoglobin was low. The specialist wanted to rerun a few tests so we did that yesterday under sedation. He got his new chemo last night and will get it for five days. We can do future treatments in the clinic but the specialist wanted the first one in the hospital because his health isn't great right now and he is a baby. His doctor was going to do it in clinic but we encouraged them to admit us. H is with him now and said he is tolerating the tube well and they started the feedings through it. I can't even begin to imagine how stressful and upsetting this must all be. Have you been able to connect with other parents who have/are going through something similar? I know there is at least one other poster on these boards who has. I really wish I could be of more help or give any better advice. You are an amazing mom. Don't ever forget that. |
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Post by Deleted on Jun 8, 2017 15:04:38 GMT -6
I'm sorry you're going through this. Hopefully, the tube helps him put some weight on and you keep getting steps in the right direction. For anything specific to the NG tube or his condition, don't be afraid to ask your nurses or doctors. (I vote nurses first because they're in the trenches with it. I remember asking DD's doc questions in the hospital and he was constantly deferring to the nurses.) Also, you may have better luck finding someone in General Discussions with experience, anecdotes, or who can put you in touch with someone with experience. sheilathetank and I may be thinking of the same poster (or not), and if we are, she's frequently found in parenting. And randomly, if your BMB was March or April (I think?) and you posted on your BMB, I think I remember lurking and reading some of your story and YS has the most beautiful eyes. (If that wasn't you, I apologize for being creepy.) |
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byjove
Ruby
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Post by byjove on Jun 15, 2017 11:25:47 GMT -6
I'm not sure what the other medical issues are, but my DD has some especially challenging food allergies and there is a good population of the kids in this fabulous related FB group I'm in that have one. Have you found a support group like that? I believe there are some that are just for any kid with an ng tube. Could be helpful!
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