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Crohn's Disease Forum » Parents of Kids with IBD » I feel like the worst mom ever today...


 
10-24-2011, 07:51 PM   #1
izzi'smom
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I feel like the worst mom ever today...

Izz got her ng tube and has been crying since 3:30. She is finally asleep (8:30) and now it is my turn to cry.
I swear she has been in the bathroom twenty times today, plus she has vomited three times. Her belly hurts, she has an awful rash on her backside, and her throat is sore. She vomited up the 20 ml of peptamen I gave her...I feel so awful!!! She said today "Why do *I* have to always do this stuff"

So I am hoping against hope that her rash will be clear, her throat will feel better, and the Prevacid will work against her nausea in the am. A better day, right?! I feel like it can hardly get worse.

Plus my parents, after telling them it wasn't a good night for a visit, *had* to pop in for a visit. I love them to pieces but I truly had my hands full and Izzi was just beside herself crying. They brought her some lovely flowers and me a beautiful ring for my birthday but AARRGGHH! Plus I had to put my pj's on and say goodnight three times to get them out the door.

Thanks for listening, and anyone doing EN have vomiting problems? We are doing 5-7 cans a day via gravity feed instead of night feedings per our doc's preference.
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.

Last edited by izzi'smom; 10-26-2011 at 11:07 AM.
10-24-2011, 07:54 PM   #2
Dexky
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Oh sorry Ang! I don't know anything about the EN but I do know how heartbreaking it is to see your child so ill. I hope things are better for her tomorrow!
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10-24-2011, 09:20 PM   #3
izzi'smom
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Now if I could quit feeling sorry for her and go to bed! I'm on a second glass of wine and considering a third Tomorrow won't be great for either of us if I don't get to bed soon lol!
10-24-2011, 09:25 PM   #4
Crohn's Mom
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Awe Angie, I'm sorry for Izz...and you!
I know this is breaking your heart
Tomorrow will be a better day right !
I can totally empathize with the o so caring grandparent scenario as well.....they mean well I guess right ? lol
Go on...have the 3rd lol...and then REST honey You deserve a good nights sleep!
big hugs !
~T~
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10-24-2011, 10:55 PM   #5
Tesscorm
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Oh, I am so sorry today was so difficult! I feel partly to blame for Izzi's suffering (and yours!) for encouraging you to try the ng tube. I can just imagine that you felt all her pain 100 times over! I truly hope tomorrow is better.

Stephen's never had the formula through the gravity feed; we've only used the pump. However, they were quite strict at the hospital in starting Stephen off very slowly with the formula rate. He started off at 25 or 50 (sorry, I've forgotten...) ml per hour and over two days gradually increased the rate to 200 ml/hr. This was to make sure that he could tolerate the formula. Perhaps slowing down the rate that Izzi is getting her 20 ml would help alleviate the nausea. They also told us to only feed our formula when it was at room temperature.

What happened to the tube when Izzi vomited? I'm only asking because while this has never happened to Stephen, others here have mentioned it... the tube can be brought up when she vomits. It would then have to be pulled back through. Did your doctor mention this (ours didn't...)? If she's still nauseated tomorrow, maybe call your doctor and ask what you should do if this happens. Hopefully, you'll be prepared to react before she even has a chance to realize what's happened.

Is her throat sore from the tube? Stephen didn't have a sore throat but he did find the sensation of the tube annoying the first day. By the second day, I think it only bothered him when he thought about it. Is she allowed freezies? If not, just ice frozen in popsicle moulds. Maybe that would help her throat or distract her a bit.

Sending lots of wishes that tomorrow is better for both of you!
10-24-2011, 10:59 PM   #6
AZMOM
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I'm with T, Ang. Love your heart.....love Izzis..... I could so join you on that 3rd glass!!

Now you know what a difference a day can make.....praying for a brighter tomorrow.

J.
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10-25-2011, 12:22 AM   #7
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No suggestions, just prayers for you and your sweet girl. What a brave girl to go through all this. Hoping tomorrow is a bright new day, and things go much more smoothly.
10-25-2011, 12:57 AM   #8
tiloah
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You are definitely NOT the worst mom! I will keep you and your kiddo in my thoughts. I hope tomorrow is much improved. You both deserve to feel better. *big hugs*
10-25-2011, 03:26 AM   #9
littlemissh
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Off course you are not the worst mum, you feel bad because she feels bad and that makes you a great, but sad mum. I hope the enteral nutrition works well for Izzy. Its worked really well for me on 2 occasions. One via ng tube the other orally and I know its been a big success with others on here particularly the little ones.
Hope you get a good sleep and your Izzy gets some relief soon. You need to look afetr yourself so that you can look afetr Izzy :-)
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10-25-2011, 06:06 AM   #10
DustyKat
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Oh Angie...MEGA HUGS...

Poor you and poor Izzi......I feel your pain hun and so hope that today is better for you both. Good luck Mum and keep us posted on how things are going.

You're are doing fab mate.
Dusty. xxxxxxxx
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10-25-2011, 01:54 PM   #11
vness1208
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my thoughts & prayers are w/ you & izzi. I hope she starts to feel better soon hang in there..
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10-25-2011, 02:09 PM   #12
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Hi Angie!
I know how she feels! i am 15 years old and have had an NG tube in since end of feb this year!
the first day i just cried and didn't speak to anyone, because my throat was so sore, didn't believe all the doctors that said "it will get better!" but it did!
Took a day or two but once i had got used to it, it was fine - felt just like a pair of glasses

since going on the EN feeding, my weight has gone from 29kg to 49kg - so it isn't all bad!!

Have also been back at school (full time) for the last two weeks - and the kids at school don't even notice it anymore!

Hope i've put your mind at ease and if you've got any other questions feel free to ask me

Josh
10-25-2011, 03:06 PM   #13
Silvermoon
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Both my brother and I had NG tubes... well my brother did - I couldn't handle it and they ended up putting in a J-tube - which goes directly into the stomach from the outside of the abdominal wall raher than down the nose/throat.

It sucked, but it did help. I found, though, that I did get nauseated if the food went in to fast. My brother could handle jsut dumping it in and letting it feed through, but mine ran in very slowly - took about 16 hours through the night. I also had to prop the head of my bed up or I puked.

So maybe flowing slower over a longer period of time would help. It sucks at the time, but in the long run it is infinitely beter for your girl to continue... she will gain weight and feel better in the long run... hang in there.

Big squishy hugs from The Moon.
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10-25-2011, 06:46 PM   #14
Brian'sMom
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Angie,
Wow! I'm so sorry its not going well right now. You're a good mom!! Hang in there. You're mom and dad probably are wanting to help 'you' and can't stay away, but I understand when 'company' (even tho its mom & Dad) is like adding to the already chaotic day. Hope and pray tonight goes better.
Sorry I don't have any EN advice to give.
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10-25-2011, 07:02 PM   #15
dannysmom
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Hi Angie. I hope things were better today for both of you!!
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10-25-2011, 09:57 PM   #16
Crohns08
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Hey Angie, you are definitely not the worst Mom ever! You're doing what you have to to help your child, in my books that makes you a good mom. I can speak from experience, sometimes things have to get a little rough and maybe even bad before they get better. But remember, however long the night, the dawn will break. =]
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10-26-2011, 03:46 AM   #17
Aaron1333
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I feel truly sorry for you and Izzy to have to go through all of this! I have only just had my NG tube taken out so i've just been through everything Izzy is about to go through. Trust me i was exactly the same, the first 3 days and nights were horrible! I wouldn't stop vomiting and running to the toilet, however as the days go by it does start to get better! I will say, since having my NG tube out my nose get's quite bloody sometimes Good Luck with everything and i hope it all goes well! xx
10-26-2011, 11:01 AM   #18
izzi'smom
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I was away yesterday for surgery...feel really bad for Izzi's dad for having to put up with the chaos all by himself yesterday (plus dropping me off/picking me up).
Izz has stopped vomiting (she is on Prilosec now)...HOORAY!
She is still having a lot of d...we are keeping her home for this reason.
She is also still complaining that her throat hurts-but won't take cough drops/chloraseptic. She will drink water and occasionally have an italian ice.
Tim and I figured out that it will take us 10 hours to get 5 cans into her via gravity feed (they are having us hold a syringe) and ideally her doc wants 7 cans. We are looking into getting a pump. I was a bit reluctant as it is not covered by insurance, but I don't have 10 + hours a day to sit next to my daughter, as much as I <3 her lol!
Her doc wants to admit her (we got less than a can into her yesterday) but I said that is a work in progress (we had to go slow to avoid vomiting and are working on getting a pump). He also wants to CT her but if it won't change her course of treatment I don't see a reason to radiate her. Since the vomiting has subsided since the Prilosec, it won't make a difference if she has disease in her upper GI tract...it's being treated. The treatment for the disease in her large intestine isn't working...I am not sure it matters how bad it is...we will continue to try different treatments until we find what works.
Thanks for all of the kind thoughts...and thanks for listening!!
10-26-2011, 12:57 PM   #19
DustyKat
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Thanks for the update Angie.

It's good to hear that things are starting to settle a little. I hope you can get a pump without too much problem. Good luck with everything hun and let us know how things are going.

Thinking of you,
Dusty. xxxxxxxx
10-26-2011, 12:59 PM   #20
DustyKat
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Oh, I just saw your pic! What an absolute angel! Bless her...

Dusty.
10-26-2011, 01:02 PM   #21
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I am so sorry to hear about Izz, and all that she has been going through. I know how tough it is for you and her dad too. My child was diagnosed at age 11, and started NG tube feeding around age 13, and it was absolutely unbeliveable how much it helped her. I cannot believe your insurance company does not cover the rental of a pump! Is it perhaps because they need a prescription from her doctor in order to send one out - or do they flatly just not cover it? In other words, if he changed the prescription to being ng tube fed via a pump, rather than by gravity, would they send one out? Do you know that you can rent these pumps?
10-26-2011, 01:08 PM   #22
Tesscorm
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Hope she's feeling a bit more comfortable with the tube. And that the vomiting has stopped!!

Re the d - May be different for Izzi, but when Stephen was on the formula only, his dietitien told us not to be surprised if he had diarrhea throughout the six weeks as 'what's going in is liquid, what's coming out will be liquid'. This made me a bit nervous as d had been one of his few symptoms - so wasn't sure if it was working, wasn't working??? Anyway, this was the case for him (altho I have read that others did not have the same experience) but there was no sense of urgency, blood, etc. BMs went back to normal as soon as he started eating solid food.

I hope you start to see improvement really soon! And that each day is a bit easier!
10-26-2011, 01:26 PM   #23
littlemissh
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I agree with kelly. When i had the pump it was just lent through nutricia who provided training, the rental of the pump and the backpack as it was a little portable pump. This meant that it could be run overnight and more slowly. They made their money as their products were used.
In the uk it depends what area youare as to which company they use, it may be similar in the states.
Will your insurance not cover the rental or is it the package of home support etc that they will not cover. Life would be so much easier for you with a pump.
10-26-2011, 01:27 PM   #24
izzi'smom
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Thanks for that, Tesscorm. She's still having urgency, accidents, and blood...but it is only day 2, really, and yesterday she didn't even have a whole can. I have faith for the future!!
The pump just isn't covered, nor are the supplies. We have to pay $75 for a months worth of formula, which is fine...I'd probably spend that to feed her for a month anyway. Our insurance is strange...but at least we have insurance!
Her dad managed to get a while can in her, plus I did 60ml earlier...and the pump should be delivered in about an hour...HOORAY!
10-26-2011, 08:32 PM   #25
Dexky
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Good luck Ang! Hope the pump came and is working out!
10-26-2011, 09:15 PM   #26
AZMOM
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Ang....she'll get there......she has to!

Hugs (and pinot noir )

J.
10-26-2011, 09:47 PM   #27
Tesscorm
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Just saw her picture! OMG, she is a beautiful little girl!
10-26-2011, 11:49 PM   #28
Entchen
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Dear kind, beautiful mom to Izzi, you are doing a fantastic job helping Izzi get used to having an NG tube; the effort that you and family are putting forth just shines through this entire thread (and other posts -- I rarely comment due to no experience with childhood Crohn's, but I do read and send warm thoughts).
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10-27-2011, 06:06 AM   #29
izzi'smom
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Pump is here...I am *loving* it! Still quite a bit of fussing (y'know, compared to eating) and backpack has a few kinks to work out (bag tends to fold and stop flow) BUT I don't mind using the pole as I hate having her up and wasting calories at this point. She *still* has AWFUL d...up 10 times in the night last night and still c/o pain, throat and belly. We're getting there, though! Thank you so much for all of the support...it SOOO helps.
10-27-2011, 06:12 AM   #30
DustyKat
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Thanks for the update Angie!

I am hoping, wishing and praying that this does the trick for your gorgeous baby......I know as each day passes things will be become easier and more comfortable for you both. Sending you all the luck in the world Mum!

Dusty. xxx
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