hi

smallworld

Moderator
HaoZi, the feeding tube is so thin and flexible that the kids don't even feel it in their throats. My daughter never noticed it and it didn't prevent her from eating. What prevented her from eating were her fears, but once the medications and therapy kicked in, she did much better.
 
H

HaoZi

Guest
I have a serious gag reflex, I honestly think I would have a problem doing the same. That's the angle I was coming from on that.
 

Jena

New Member
all kids react differently..... difficult child has been fixated on tube since day one. it took us 4 nurses husband and i to hold her down while she bit cut me hit screamed kicked to get it in. most traumatic thing i think i've ever been through lol. doctor's thought she'd stop fixating on it by day 3 as most kids do yet surprisingly difficult child has not :) shocker!! we'll see how she does on 7.5 i never went that high at home.

this morning she told the doctor on rounds i am not ready to eat and it's going to be a long time till i am. doctor told me it's one of those things that is so incredibly hard to treat yet once the stars are all aligned it's treatable 100% with zero relapse. so we'll see how long our stars take to align themselves.

i was hoping to head home in 3 to 4 weeks check on easy child for like 3 days. we found a cheap flight. yet doctor and i spoke and they said ex h has been caling both the hospital and the clinic each day hounding them. they amazingly handled him didnt tell me a thing so as not to upset me. they told him we'll call you each day and give you her medical update. i said wow you didnt' even tell me that's amazing. she said no you have enough going on right now.

so, doctor and i both agreed having dad come to see her so i can go home for a bit wouldnt' be the right choice. he may trigger her anxiety with his craziness the whole your hospital bed may go on fire etc. if you do this that or the other thing. also we run the risk of her shutting down because i leave. it's not like we're going to get another shot at this it's now or never. so i'm here for the duration sadly enough.

i'm slowly adjusting. i have therapy for me on monday, than wednesday night i'm leaving difficult child for a bit and taking a theraputic healing yoga class for my swollen body. and i am going to church once a week here at the hospital. its been hard because therapy for her hasn't started yet and it's so important because without that piece food wont' come so all her venting is on me still.
 

DDD

Well-Known Member
I have nothing new to offer but wanted to repeat how much I admire your Warrior Mom position. It is wonderful that you have some time focusing on you. I do know it is really difficult to keep in touch with yourself when your chlld is in crisis.
Hugs. DDD
 

smallworld

Moderator
I remember that M fixated on the tube at the beginning as well, but then it just became a part of her. I hope 7.5 mg is your magic number. That was ours (although when M relapsed a year later because we reduced her Zyprexa, we had to increase her to 12.5 mg to get her eating again and then lower her back to 7.5 mg again). So there's a chance you may have to go higher given how ill C has been.

Hang in there, and be good to yourself. Hugs!
 
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