We are home

[Mom2oneboy]

and it felt so good to be in my own bed last night!! It was a crazy day yesterday trying to get all our EN supplies delivered to our house due to mix ups and the crazy weather we had. Didn't get S hooked up for feeding until about 8:30.

S is doing really well with the tube insertion. His dad actually does it for him and he still gets nervous right beforehand but tolerates it well. Last night he woke twice to poop and then this morning his stomach was killing him and he pooped 3 more times with blood. I talked to his doctor this morning and he thinks it's just too much for his little tummy. He wants to switch him to Peptamen Jr. which has a higher caloric value than Elecare which means he should need less of it and we can slow the rate down on the pump and give it to him slower. The rollercoaster ride continues......

 

[crohnsinct]

Oh YAY! Glad you are home safe and sound. Also hoping the new formula works better for him.

 

[Devynnsmom]

I'm glad to hear you are home and will now be comfortable I hope S starts feeling well soon. Its so hard to watch our babies when they are not well. (((hugs)))

 

[DustyKat]

Thanks for the update Shelley!

It's so good to hear you are home. There really is no place like it!

Awww bless S, what a fab little guy...:hug: I hope the tweaking of the feed and rate do the trick for him, I'm sure it will. Good luck and keep us posted!

Onwards and Upwards!
Dusty. xxx

 

[Tesscorm]

Glad you are now home! It is a bit overwhelming with all the deliveries, equipment, formula, etc. :yfaint: but glad you're getting settled.

I hope the new formula helps him quickly!! What a tough little kid to overcome his anxiousness! I'm sure in a few more days, he won't be nervous about it at all. And, what a tough hubby too! I have to admit, when Stephen and I were at the hospital, they asked if I wanted to learn to insert it for Stephen. :ywow: I chickened out and used the excuse that he should learn in case I wasn't there but, really... I was just afraid to do it! Bad mom here! BUT, I would've learned if I had to!!!

Hope all goes well tonight! :ghug:

 

[imaboveitall]

Peptamen is completely broken down; all nutrients in their simplest form. Good move on the doc's part. And Shelley, just for reference, V had to be on the pump 24/7 for 30 days to get stabilized. She could not handle raising the rate, for that long. So if he needs to be hooked up more hours per day for awhile, it'll be worth it in the long run.
HUGS :heart:

 

[DustyKat]

It is so fab to have our own team of experts! Kudos to all you guys for being the best in the business! :medal1:

Dusty. xxx

 

[Sascot]

Good luck with the change of formula. I have no advice for this as I just fed my son through his tube with a gravity bolus at regular meal times (he kept his tube in).

 

[Mom2oneboy]

We have our new formula and this one is premixed. Yay! The doctor wants him on 2000 calories a day and each can is 250 calories totallying 8 cans. Geez, it's going to take awhile to get that much in him especially if I have to slow the rate down. I was hoping for less time :ymad:.

How many calories are your kids getting and at what rate are you giving it? How many hours a day are they on the tube?

On a happier note, S is now the proud owner of an X Box!!! Once we get his feed going, I'll get it hooked up for him. He is so excited.

 

[DustyKat]

YAY! Bless him. :hug:

Good luck with the new formula hun! Now over to the experts!...

Dusty.

 

[Tesscorm]

Hey Shelley,

When Stephen was on the EN only, he was getting 3000 calories, 2000 ml per night. His rate was 200-250 ml/hr (depending on his schedule, ie later night = less time). At these rates, his feed ran 8-10 hours. He was given the option to increase the rate to a maximum of 300ml/hr IF he found that he could tolerate it. I didn't allow it very often as I believe beyond a certain speed, your body just isn't able to absorb it as efficiently.

(Maintenance now is half the dose, half the time...)

Good luck tonight!

 

[Twiggy930]

We are doing 1300 ml (1950 cal) of Modulen at a rate of 160 ml/hr which takes 8 hours. S is also allowed to have Boost during the day and he generally has two bottles. I am going to start subtracting the amount consumed in the day from the night time volume, corrected for the appropriate calorie intake.

 

[imaboveitall]

2500-3000 cals (formula was 1 cal per ml, a can is 237ml) over 24hr for 30 days
Slowly reduced to 16hr/day, and on down from there
Now getting 1200cals overnight, at 160-165ml/hr. Takes about 8hr.

 

[Mom2oneboy]

Thanks for the info! Wow, I hope we can eventually get up to thos rates. I have S at 100 tonight because 120 seemed too much for him last night. He's not going to school tomorrow so we will just run it longer.

Tonight was frustrating! The pump stopped saying there was an error in the flow. Figured out the problem was with the ng tube and could not flush it. Ended up having to pull it out and put it back in. Little guy cried which breaks our heart. You start to question yourself about whether you're doing the right thing you know?

S is now playing with his new Xbox so he is a happy guy for now

 

[DustyKat]

You start to question yourself about whether you're doing the right thing you know?

Oh yeah, every time there is a glitch with my two the first thing I do is second guess myself!

:hang: Mum, you are doing fab! :thumleft:

Dusty. xxx

 

[imaboveitall]

OMG, Shelley, the "no flow out" caused by blocked tube happened to us TOO on the FIRST night home.
I was panicked. I coun't FLUSH it...I called the on call doc, he said to flush it with white vinegar; that worked.
We weren't taking the tube in/out yet at that point so I was truly panicked.

Since you're removing/inserting, clogs are not a big deal.
Here's what you need to do to prevent them:
Upon removing flush with at least 50cc (I use a 10cc syringe, filled 5x) HOT water, then 50cc white vinegar and hang to dry.
I have never had a clog since I started doing that.

Re: flow rates, remember his motility is probably way off. V was on 90cc then 100cc/hr for maybe...a week? Before she could tolerate 120cc/hr at first. Slow is better at the beginning. :heart:

 

[Tesscorm]

We had flow errors the first week as well! Guess it's a rite of passage!

Our problem wasn't the actual NG tube, we had problems with the tube attached to the bag and with the 'eye' of the pump.


Tube - make sure there are no crimps in the tubing. Also, the adjustable 'roller' (that allows you to 'close' the pump - hope you know what I mean??? :blush squeezes the tube, if it's been left in a closed position for a while, the tube takes that 'squeezed' form and doesn't immediately bounce back to an open position. Slide the adjustable roller out of the way and then squeeze/roll the tube between your fingers to open the passage again. (Julie was much more succinct in her explanation - took real effort to not say 'the little white thingy' :lol

Eye of the pump - where you position the chamber when hooking up to the pump (chamber is where the formula drips), there are two small black rectangles. Apparently, these rectangles 'see' the drips. If they have become dusty or dirty, it will cause a flow error. Just wipe them with a q-tip.


Of course, all this is assuming that your tubes and pump are the same as mine!:facepalm:

I hope the rest of the night went well...

 

[DustyKat]

dusty or dirty,

And I got a tag!...anda: :lol:

 

[Tesscorm]

Was it the Dusty or the Dirty???

 

[Mom2oneboy]

Thanks for the advice on the clogging issues!! We are using a new tube every night so I'm hoping that whole scenerio was a one time deal. The pump had another flow error at 5am this morning and it was because he was laying on the tube. That was an easy fix thank goodness. I ran the rate at 80 last night and he didn't have to get up to go poo in the middle of the night like the previous night. He was up at 7:45 instead. And is the blood ever going to stop???? Please let it stop...it is worrying me to death!! He's also still having some cramping when he goes.

Hoping for a good day for all our babies today!
Shelley

 

[DustyKat]

Was it the Dusty or the Dirty???

Must be both cause dirty is my middle name! :shifty-t:

 

[DustyKat]

Lord knows I am no expert hun but I would well imagine that as the inflammation settles so will the bleeding stop. Perhaps you will find as the days go on and the bowel is more and more rested the bleeding will slow and eventually stop.

Good luck!

Dusty. xxx

 

[imaboveitall]

Aw Shelley, you're so like me...you want results NOW. And you want them clear and unambiguous. My dear soul sis...
We cannot have this with this stupid disease. Cannot and that makes me...here we go...:voodoo::voodoo:

V never bled with the exception of when caused by the small trial of Pentasa, but it would for sure make me obsessed if she did so I can understand. Don't second guess the formula, even if it doesn't help the bleeding the nutrition is worth it. :heart:

 

[Mom2oneboy]

Lord knows I am no expert hun

Are you kidding me?? I think the people on this forum would disagree with this comment! I have come to value your advice/info greatly!!

 

[Twiggy930]

We have had a few flow errors. The ones in the night were from the tube getting bent while my son rolls around at night. This seems to be happening less, perhaps he is subconsciously avoiding the tube in his sleep???

At the start we also had LOTS of problems with the pump not pumping at the outset of setting it up for the night, couldn't even prime the pump. This turned out to be the little valve that opens and closes the pump, if the valve on the tube doesn't sit just right in pump the whole thing won't work. Now that we know what to look for it is easy to fiddle with and fix but it sure did cause some problems at the beginning.

We also wash out the NG tube as Julie explained but we rinse it with a solution of baking soda and water instead of vinegar.

We have had a few times where my son inserts the tube and when we try to pull back on the syringe to check for stomach acid the syringe won't pull back. It seems like the tube is blocked but when we pull it up we can flush it no problem. It is almost like the tube gets crimped inside of him somewhere. I'm not sure how this happens or how to avoid it, we just start again.

Yesterday my son woke up with a pain in his chest that he was very alarmed by. When I got him to describe the pain it was clear that it was heartburn and then it dawned on me, I hadn't changed the timing of when he takes his acid reflux medication!!! I was still having him take the Prevacid in the morning but he is only eating at night!!! :ybatty: We have switched it and this morning... no heartburn.

Guess what I have to do today... buy my son bigger pants!!!!!!!!!!!! He has been wearing the same school uniform pants for a year and a half and he just informed me last night that they have become a bit tight! :dance:

 

[Mom2oneboy]

Aw Shelley, you're so like me...you want results NOW.

I wanted results YESTERDAY!! :ymad: I'm thrilled with the nutrition side of this. Maybe a little borderline obsessed. I keep looking at the pump to see how many calories he's taken in! It's amazing to see how quickly his color has returned. And we've only had 1 poop so far today :thumleft:. For some reason any time I "talk" to you I feel like I need to mention poop :lol2:.

 

[Mom2oneboy]

Guess what I have to do today... buy my son bigger pants!!!!!!!!!!!! He has been wearing the same school uniform pants for a year and a half and he just informed me last night that they have become a bit tight! :dance:

Yay!! How awesome is that!! Hopefully, some good energy will follow. Can't wait to see some meat on my guy. Right now I can see every rib. Looks like he just walked out of a concentration camp

 

[S mom]

Jumping in a little late to the conversation here, but I just wanted to add my support to your EN "adventure"!
We did exclusive EN for 12 weeks and I remember feeling like it took forever for my son to start gaining weight and for his BM's to decrease - probably about 3 - 4 weeks before he was on the road and then he just took off - rapid improvement!!
We left the rate at about 80-90 for the first month (he just stayed on it 24/7) and then slowly started to increase so he could have some time off - we never got over 200 though, he would start to complain of nausea... but he could get his whole 3000 calories in easily if he started in the evening and went through the night.
And yes... we had "flow errors" too - panicked by them to start but then by the end, I think I could problem solve it in my sleep (and often my son would wiggle the tube and reset the pump in his sleep - not even remember that he'd done it in the morning! lol). It's amazing what you get used to.

 

[Tesscorm]

OMG, that's how Stephen looked! He went from approx. 150 lbs to 127 lbs at diagnosis. I remember touching his shoulders and thinking they felt skeletal! Literally felt like skin and bones! He's now stable between 155-160 lbs!

It's funny because he still takes in 1500 calories 5 nights per week AND eats a regular diet but hasn't gone beyond a healthy (pre-sickness) weight. He'd been concerned about that when he started eating while also taking in the formula but... for whatever reason, gaining TOO much weight hasn't been an issue. And, I guess that's the case for Violet too???

Twiggy - good point about the antacid. We were told to take it just before bed.

 

[crohnsinct]

Hmmm..I WAS considering EN but gosh all this tube talk is downright intimidating. You moms are awesome for becoming the technical experts you are! I am in awe of you all. Your children are truly blessed.

Hoping for excellent results for you and your boy in the days to come Shelley....sounds like things are starting to look up. As for the blood, my daughter is 9 weeks from dx, on Remi and pred and still bleeding but otherwise good. Stopped gaining weight though and still 15 pounds from the weight they want her to be. I will let you know what the doc says about the bleeding at our follow up next week.

 

[imaboveitall]

Hey Shelley, The Saint now wants specimens every WEEK instead of every TWO so I am collecting TWICE as often.
Don't be jealous. V's poo is a monstrosity, like a huge coral reef but uglier. oo: :hallo3: Now realize she is a big teenager and super mature and an honor student blah blah but she will NOT collect her own specimens. :thumbdown:

Obsessed...watching the pump...ok we aren't soul sisters we are separated twins. :rosette2:

RE: concentration camp appearance, I can give a witness (sadly) that V was right there.
Here's her stats yet again to inspire any and all considering or doubting (crohnsinct, just in case O needs more than Remicade):

Before getting sick:
55in 78lb
7 weeks after onset of symptoms:
55in 59lbs
4 mo after starting EN:
57.5in 99lb
Currently: (3 yr 7mo later)
63.5in 138lb

Twiggy, SWEET about the pants! :thumright:
Tess, V hasn't leveled off, she keeps gaining. But she got sick right at onset of puberty and had a lot of catch up gain/growth, and she's got 2 years left of growing unlike Stephen at age 17. She has a very big frame, size 10.5 feet and hands like a guy so...:shifty-t: Thank God she has a pretty face to distract from them...

 

[Tesscorm]

Julie, Makes sense that Violet is still growing, Stephen's concern was that he would become just plain 'overweight' (after seeing him so thin, certainly wasn't my concern! :lol.

But, now that he's been relatively 'fine' re his Crohns, I am a bit surprised that he's eating the same diet, in the same activities he had before Crohns and has added in an extra 1500 cal/day yet hasn't gained any excess weight??? (Personally, I've just gained 5 lbs just thinking about taking in an extra 1500 cal/day! :lol

hmmm, maybe something else to ask his GI next week... Could inflammation still be affecting his absorption of 'regular' foods?

 

[imaboveitall]

Tess, I didn't think of it that way but yeah...he may need to up his cals. I'd ask about adding more formula. Maybe he looks great but "should" or would be even taller or bulkier if getting more cals.
V eats prob...1500cals PLUS the 1200 she gets at night so...
She isn't fat at all, she is a size 7 pants, she has a big chest (bra size) and big wide square shoulders along with the big feet/hands.

I looked up Stephen's formula, Tolerex and see it's LOW FAT. How come he's on low fat? V's (look it up, it's called Pediasure PEPTIDE now, used to be called Vital Jr) has much higher fat content.

 

[Tesscorm]

Hmmm, no one ever mentioned anything specific about the level of fat in his formula??? I'm fairly sure its the one commonly used at his hospital as his dietitien had a store room full of formula to give patients for their initial six weeks and my friend's daughter is a patient at the same clinic and she was given the same formula for her six week course. She's only about 10 years old and is tiny so it's not a matter of Stephen's size or age. It does seem to be working for Stephen though as he seems to be a good weight for his height (5'10", 155-160 lbs). But interesting... now I'm really curious... will ask GI for sure.