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We have been admitted

Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
Well we've been admitted to the hospital. They want to start the EN and then monitor how he does with it. They are also doing labs because he continues to bleed and may need a transfusion. The plan is for us to be out of here tomorrow. I cannot tell you how relieved I am going to feel once he starts getting some good nutrition. He looks so thin!! The last few days waiting for this appt. I feel like my mission has been to keep him hydrated and alive.

The dietician came in and said he needs to gain at least 10lbs and that the formula is going to make him feel so much better. Had it not been for this forum, I would not even know about EN! Very grateful for all of you here and your knowledge and willingness to share it.
 
Tesscorm

Tesscorm

Moderator
Staff member
Shelley, I'm so glad he will be starting the EN!! It will certainly give him the nutrition he needs and alleviate, at least, one of your concerns! :)

Stephen gained approx. 10 pounds during the six weeks and then another 20 lbs. in the six weeks following, once food was added back. The dietitien agreed with me that it was only his activity level (school phys.ed. and hockey) that kept him from gaining more during the initial six weeks. So, I'm sure Stefan will quickly gain some weight!

If he has a hard time with the 'gag' reflex as he's inserting the tube, I told Stephen to visualize just how tiny the tube really was compared to how big a 'bite of food' is when he swallows it... Sending lots of luck that it works for him! :ghug:
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
The tube is in and we are feeding!! Woo Hoo!! They have him on Elecare formula now with the intent of eventually moving him to peptamen. I guess the Elecare is more digested and they don't want his guts to have to do any work at this point. They are feeding very slowly and then will gradually increase him every hour to make sure he tolerates it okay.

He says the tube in his throat feels weird and he doesn't like it. But he's wanting to go to the playroom and check out their video games so it's not bothering him too bad :).

We are still waiting on the labs. I sure hope we don't have to do the transfusion!
 
imaboveitall

imaboveitall

Shelley, I of course as you know have been there and I am so glad they started him on a very broken down formula. Violet was started on regular Pediasure and it made her pain much worse until she was switched to the peptide version.
Awesome and I just know he is going to feel better straightaway. You don't realize how malnourished they are until they start to gain on the formula. V's weight gain was dramatic and she felt better almost immediately. :thumleft:
 
Sascot

Sascot

That's great that he finally has the EN going - hope it helps him alot! My son actually needed to lose weight so I had to ask them to give him slightly less than he needed (although he was never hungry). He looks great now! Good luck, hope he doesn't need the transfusion.
 
DustyKat

DustyKat

Super Moderator
Thanks for the updates Shelley. :)

It is so fab to hear that all is going well. Long may it continue hun and I hope more than anything the EN gives him the outcome he needs and deserves. I have a good feeling about this...Go S!!!

Sending you loads of love, luck and well wishes...:heart::heart::heart:

Dusty. xxx
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
Julie,

Keep educating people about EN! I had no idea what it was and my doctor never mentioned it. It wasn't until reading your posts and specifically one where you put a link to the EN board and I clicked it to find out more info. I am so grateful to you. In fact, in your honor we will be naming our formula bag the "Julie Bag" :thumleft:.

The dietician said 6 more lbs and he would have been admitted for a few days for TPN. He's a walking skeleton right now. :(

imaboveitall said:
Shelley, I of course as you know have been there and I am so glad they started him on a very broken down formula. Violet was started on regular Pediasure and it made her pain much worse until she was switched to the peptide version.
Awesome and I just know he is going to feel better straightaway. You don't realize how malnourished they are until they start to gain on the formula. V's weight gain was dramatic and she felt better almost immediately. :thumleft:
Click to expand...
 
imaboveitall

imaboveitall

Thanks, hon :hug:. I just know it saved Violet and she too was right about ready for TPN. 55in and 59lbs...she looked like a skeleton too.
*sob* I have PTSD to this day.
Wait until he starts gaining and they do pretty fast on this stuff...it'll be so great. God love you guys :Karl:
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
No transfusion....woohoo! Dr. said all his labs look great. How can that be??? Just another confirmation that his labs do no reflect what's going on in his body. So frustrating but I'll take it this time.

We will continue with the pred and stop the entocort. He feels like we need to do that since he's still having significant blood in his stool. The plan is to start decreasing the pred on Thursday for the next few weeks in hopes that the EN will kick in.

Please, please, let this work for my little man.
 
imaboveitall

imaboveitall

Shelley, remember...labs not aligning is more common than we'd think, Violet being a case in point. She was prob even sicker than your Stefan at dx but her labs weren't way off, just lactoferrin was. Everything else (and she had a TON done) were either normal, right near normal or off by just a few points of normal.
If you looked at her labs before seeing her you'd expect to see a pretty well looking kid.
Now some folks labs do reflect correctly what their bodies are doing but it sounds like Stefan may be like V and be the frustrating sort of case wherein they don't align.
No B&W for us, my friend. :ymad:
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
You know what Julie, I didn't even ask what he weighed today. Just didn't feel like I could handle it. On the 20th he was 78lbs and I know he's less than that now at 60 inches tall.

He's getting 2000 calories a day. Just typing that gets me excited!! The dietician said he will gain wait quickly and feel better almost immediately. I so hope it works out that way!

imaboveitall said:
Thanks, hon :hug:. I just know it saved Violet and she too was right about ready for TPN. 55in and 59lbs...she looked like a skeleton too.
*sob* I have PTSD to this day.
Wait until he starts gaining and they do pretty fast on this stuff...it'll be so great. God love you guys :Karl:
Click to expand...
 
M

MomofIBD's

Ahhhh Shelley! Your poor little Big man!!! I'm hoping this does the trick & real quick! Big Hugs to you & all that you carry on your shoulders!!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Shelley,

I'm sure you'll see a difference very quickly. Stephen also felt better almost immediately. He started the EN on, I think, Saturday night, they gradually increased the rate and he came home Monday. I let him stay home from school for most/all of that week but, really, he was feeling well enough that, I remember thinking, he could have gone to school by Thursday!

As for the tube in his throat, it bothered Stephen the first 24 hours! I could see in his face that he was worried he'd have to deal with that 'annoying sensation' for weeks! But, honestly, in a couple of days, it stopped bothering him - and, I don't think it ever 'hurt'. Also, remind Stefan, for the most part, he'll have the tube in while he's sleeping. :)

Just totally out of curiosity, does his GI have any other patients using EN?
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I didn't have EN feeding but I did have a tube put in to help clean me out before my resection (couldn't possibly drink the stuff and these days they don't even clean people out anymore grrrr!). It was annoying and felt weird at first. He will get used to it. My advice to him is if he needs to pee, pee and if he needs to poo, go! Don't wait like I did cause I wound up throwing everything up and the tube and made a mess on the floor below lol.

Hope this works out for him! :D
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
Tess,

S keeps saying that the tube in his throat feels weird. We've been reminding him that it will be there mostly while he's sleeps. He fell asleep a bit ago and when he woke up he said he didn't feel a thing and seemed relieved. He says it doesn't hurt that it's just annoying. Also, we have had NO belly pain at all since this has been going. I'm praying that continues!

We are his only patient on EN. Can you believe that?? I also wonder if he thinks this will last. He's all for it though...just seems a tad surprised that we're willing to do it.

Tesscorm said:
Shelley,

I'm sure you'll see a difference very quickly. Stephen also felt better almost immediately. He started the EN on, I think, Saturday night, they gradually increased the rate and he came home Monday. I let him stay home from school for most/all of that week but, really, he was feeling well enough that, I remember thinking, he could have gone to school by Thursday!

As for the tube in his throat, it bothered Stephen the first 24 hours! I could see in his face that he was worried he'd have to deal with that 'annoying sensation' for weeks! But, honestly, in a couple of days, it stopped bothering him - and, I don't think it ever 'hurt'. Also, remind Stefan, for the most part, he'll have the tube in while he's sleeping. :)

Just totally out of curiosity, does his GI have any other patients using EN?
Click to expand...
 
imaboveitall

imaboveitall

V's doc has "a bunch" he said of cystic fibrosis kids who are tube fed and three Crohn's pts that I KNOW of but I am pretty sure he has more, his practice is huge (three offices widely scattered) and he is ALL about nutrition.

Of course your doc is surprised. People think the tube feeds are some huge horrible deal...I did, until she got so sick I couldn't argue nor could she. Had I had the sense to realize she was starving, I'd have started them WEEKS before I did. What an idiot I was, all because I thought the idea of her having the tube was awful :eek2: I still cry over that.
Once she started taking it in and out we were like...oh my GOD...is that all there is to it? :ybatty:

You may consider continuing it as an adjunct after the exclusive first weeks are over and he is recovered, as Tess's Stephen and V do. The peace of mind knowing they are getting all the nutrition they need, and whatever they eat is just a bonus, is so worth it. :)
 
Tesscorm

Tesscorm

Moderator
Staff member
It certainly is peace of mind! From the day Stephen learned to say 'no' :arghmatey_ani:..., his diet has always concerned me! Tons of pressure is now 'off' both of us because I know, even if he doesn't eat the fruits, veggies, etc. that he should, he IS getting his nutrition! :emot-waycool:
 
S

Steve S

Shelley, I hope he feels better sooner than later and that he starts putting on the pounds. 10 years old....these kids are amazing. You tell him to hang in there, and that he's unbelievably brave.

Prayers for y'all.
 
M

momoftwinboys

As much as I would not like having my son spend the night at the hospital, I would be relieved to have people around that could help him learn the techinique and make sure everything was going well. Glad to hear no transfusion necessary and he is learning and adjusting. Hope your son is home playing video games soon.
 
Twiggy930

Twiggy930

Location
Canada
My son complained that the tube in his throat was annoying for the first 2 nights and then he was used to it. It never hurt him, it was just annoying.

My son is now approaching his pre - Crohn's weight!!! I'm not exactly sure when the weight loss started but I'm pretty sure he lost 17 lbs, most of that loss occurred in a 2 week period. He started gaining when he went on prednisone but that weight gain plateaued a couple of weeks ago. The EN has definitely contributed to this further weight gain!!! Yippee! No more skin and bones!

It is funny that docs don't think patients would be willing to do EN. My son, totally unprompted, has informed me that if he has to choose between prednisone and EN again he is choosing EN! :)

Lately my son has been trying to convince his 9 year old sister to give the tube a try! :lol: I think she is considering it... :rof:
 
imaboveitall

imaboveitall

Twiggy, V's doc said he has inserted the tube on HIMSELF just to show kids it's painless. I'm tempted to do it just to see.
Yes, I am half crazy from having a sick kid :rof:
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
Trying to turn his sister on to the feeding tube....LOL. That Sam sounds like a piece of work! So glad he is putting the weight on. 17lbs is a lot to lose on a little boy!!

How many hours does it take to get all his feeding in?

Twiggy930 said:
My son complained that the tube in his throat was annoying for the first 2 nights and then he was used to it. It never hurt him, it was just annoying.

My son is now approaching his pre - Crohn's weight!!! I'm not exactly sure when the weight loss started but I'm pretty sure he lost 17 lbs, most of that loss occurred in a 2 week period. He started gaining when he went on prednisone but that weight gain plateaued a couple of weeks ago. The EN has definitely contributed to this further weight gain!!! Yippee! No more skin and bones!

It is funny that docs don't think patients would be willing to do EN. My son, totally unprompted, has informed me that if he has to choose between prednisone and EN again he is choosing EN! :)

Lately my son has been trying to convince his 9 year old sister to give the tube a try! :lol: I think she is considering it... :rof:
Click to expand...
 
Twiggy930

Twiggy930

Location
Canada
Sam is now getting his whole feed in 8 hours. He takes 1300 ml (1950 calories) at a rate of 160 ml/hour. We took a few days to ramp up to 160 ml/hour. This morning he told me that sometimes in the night he pauses the pump because his tummy feels a bit achy and after a few minutes, when the ache has subsided, he starts the pump again. I had no idea he was doing this...

Julie - I'm surprised you have never tried to insert the tube!!! I dare you to try... :ylol2:
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
To start off they want him at 120ml/hr which means it's going to take 12 hours to get it all in. They said as he gets used to it they will up it where it doesn't take as long. As it is, during the weekdays we'll have to start it at 6:30pm to get it done before he goes to school. Would love to get it down to 10 hours which would work better for our schedule.

Twiggy930 said:
Sam is now getting his whole feed in 8 hours. He takes 1300 ml (1950 calories) at a rate of 160 ml/hour. We took a few days to ramp up to 160 ml/hour. This morning he told me that sometimes in the night he pauses the pump because his tummy feels a bit achy and after a few minutes, when the ache has subsided, he starts the pump again. I had no idea he was doing this...

Julie - I'm surprised you have never tried to insert the tube!!! I dare you to try... :ylol2:
Click to expand...
 
Tesscorm

Tesscorm

Moderator
Staff member
Our dietitien has inserted the tube as well - she said if she was going to encourage kids to use it, it was only fair that she actually knew how it felt! :)

Twiggy - maybe you should try to turn the rate down a bit???

Also, another little tidbit... this has happened a few times lately!:eek2: Because Stephen's feed only runs approx. 4 hours now, he has become used to just rolling over and shutting off the pump when the formula is done (while still pretty much 'asleep'). Problem is, a few times now, the formula wasn't actually done - the beep was a 'flow error' and he ended up missing some or most of the feed, i.e. last night, he only had 100 ml out of the 1000 ml he should have :( We normally just make up that night with one of his other 'off' nights but, it's a waste of formula and I want to keep things consistent. So, make sure you can 'hear' the beep in case there's a flow error.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Mom2oneboy said:
We are his only patient on EN. Can you believe that?? I also wonder if he thinks this will last. He's all for it though...just seems a tad surprised that we're willing to do it.
Click to expand...

Maybe you'll start a trend:)! I hope it works so amazingly well, your GI is compelled to write about in JAMA. Good luck Shelley!!
 
C

Chloeem

EN works great! My daughter has had her NG tube since 9/1/11. It was hard getting use to but she is so good with it. It was hard on me having to put it in. She just got her 11th tube. They told me she can keep it in 4-6wks but find around 3wks or so it doesn't work as well. How are you testing placement? We use ph paper. She started at 29lbs and is up to 36.10. She is on 550ml over 10hrs. We start usually at 8pm and alarms at 5:30 or so. It does not run the full 10 hours. I hope you can get the time to work with your schedule. Any questions send me a message. Good luck and tell him he has a friend Chloe with a ng-tube.
Sue
 
DustyKat

DustyKat

Super Moderator
Wow! Way to go Chloe! :medal1:

I bet you are one proud Mum Chloeem and rightly so! :ybiggrin:

Dusty. xxx
 
Mom2oneboy

Mom2oneboy

Location
I'm a southern girl
So glad Chloe does well with the tube and is gaining weight. Love that picture of her. She looks like a little doll. We had been taking S's tube in and out but he's decided it might be easier just to leave it in. His first day back at school will be Monday so we'll see if he changes his mind before then. We are good with what ever he is comfortable with.

Is Chloe strictly EN or does she eat food along with it? S is strictly EN and on day 6. He's done well without the food and is encouraged that his stomach pains are lessening. He does comment when the pizza commercials come on so I quickly change the channel. I never realized how many food commercials there are!!
 
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