laurie
Junior Member
Posts: 67
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Post by laurie on Feb 3, 2006 20:00:36 GMT -5
hunter had his upper gi today (we've started the work on his esophagus now)
there is plainly a bad block.
they had his surgery set for feb 17th but called me this afternoon to change it to march 13th.
the anesthesia dept wants it to be done in the main hospital not in the outpatient area. they felt that after they went through his medical records that he was too high of a risk to do the procedure in the o/p dept and needed to have it done in the main hospital incase they have problems.
i guess that should be a relief (they are planning ahead), but in a way it has made me more worried......haha
i'll keep yall updated.
laurie
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laurie
Junior Member
Posts: 67
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Post by laurie on Feb 20, 2006 8:19:46 GMT -5
ok, i have another question...............
has anyone heard of EE (eosinophilic esophagitis)?
this, along with checking for cancer, is another thing they are taking the biopsy for on march 13th.
from what i've read, there is a big possibility, if this comes back possitive, that hunter is totally allergic to food. we would end up losing milk and eggs with this, along with everything we have already lost.
has anyone elses children been tested for this?
laurie
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laurie
Junior Member
Posts: 67
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Post by laurie on Mar 12, 2006 16:35:16 GMT -5
just wanted to let yall know we leave at 5:00 in the morning to head to charleston, south carolina to musc for hunter's surgery. i'm not sure if they will be keeping him or not. i'll be sure to let yall know the minute we have the biopsy reports back..............hope everyone is well.
laurie
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laurie
Junior Member
Posts: 67
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Post by laurie on Mar 16, 2006 9:20:31 GMT -5
ok, surgery went very well.............they took biopsies from the esophagus, stomach and intestines.
they said it would be 4 to 5 days until we have the results, so i'm hoping we know something by tuesday.
laurie
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laurie
Junior Member
Posts: 67
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Post by laurie on Mar 25, 2006 8:20:22 GMT -5
hi all............hunter's biopsies looked good. i dont think they can rule out ee but his numbers are low, possibly due to the fact that the allergic food has already been eliminated.
hunter's weight is now our problem, he doesn't have any weight...haha.
he took off his shirt the other day and you can count every bone in his body. the doctor isn't wanting to put in a feeding tube yet, but told me to get him to drink pediasure. his dietician finally emailed me back and said no way to the pedisure (it has sugar in it). she wants the doct to refer hunter to a metabolic specialist. anyone been through this yet?? of course i'm sitting here going....oh great, yet another doctor i have to drive 2 hours to see. you would think they would try to find one here where i live, but i guess they are wanting everything involving the hfi to be handled in charleston. gosh i would kill for a normal life for my son!!
that's the latest, hope all is well with everyone else!!
laurie
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lisa
Full Member
Posts: 215
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Post by lisa on Mar 29, 2006 19:01:05 GMT -5
Laurie,
Have you looked into unflavored Pedialyte? I think it has calories and electrolytes that you may be looking for. Our pediatrician said kids don't usually like the taste, but Nate will drink it just as readily as water and it is HFI safe.
Lisa
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Post by Bia on Apr 18, 2006 9:45:08 GMT -5
Hi.
The eldest of my sons - all affected by hfi - is really slim and next time we are checking him, i will insist with the doctors to take seriously into consideration his unwilling to eat (it takes ages and he often says he'd rather eat tablets if he could!)
Anyway, I know Pedyalite - i use it when my sons have high temperature or dhiarrea - i never thought it could help with being not hungry at all. I will talk to my doctors about this next time and i will let you know.
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laurie
Junior Member
Posts: 67
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Post by laurie on Apr 25, 2006 19:32:15 GMT -5
Hey all, just wanted to pop in and give you an update.............. Hunter had surgery yesterday morning to have his feeding tube put back in. Hopefully now things will be a little easier. We will be taking away his "comfort" foods (eggs,noodles and chicken nuggets) probably in the next week or two to try to get him to start trying to eat different things. I haven't really been able to do that without the tube being as he is so malnurished and refuses to try anything different. In all honesty, I can't blame him for not wanting to try different things with everything he has been through in the short, almost 8, years of his life. Once his comfort foods are taken away, if he wants food in his mouth, it will have to be something new. (and HFI safe of course) If he opts to NOT eat the "new" food then his only feeding will come from the feeding tube. We're hoping his need to actually chew food will override his fear of something happening. (I've got my fingers crossed!!) We go back in 4 weeks to have this tube replaced with a button, hopefully he will do well enough for that to be done outpatient. I was shocked we only stayed overnight for this one, that's a record for Hunter. I've put Hunter a website up, we would love for yall to go visit it. It goes in to more detail of this last surgery........ www.caringbridge.org/visit/hunterlawhorn Laurie |
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Post by kristen on Apr 25, 2006 21:34:39 GMT -5
Laurie, I'm SOOO glad you guys are home! And it does sound like a good plan!! I only have a second, sorry to be so brief...I'll catch up with you tomorrow. But did want to point something out before I turn in: www.nutritiondata.com/facts-B00001-01c201w.htmlIt's not a ton, but if his diet is that limited, and he's eating that much of it.... Anyway, crossing everything & saying lots of prayers that this works!!!!! KJ |
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