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Crohn's Disease Forum » Parents of Kids with IBD » C winter update-frustrated


 
03-20-2014, 07:59 AM   #301
crohnsinct
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Ha! If only they followed our directives as closely eh?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-20-2014, 09:50 AM   #302
imaboveitall
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God love him. They likely made him worried that omitting any step may have a terrible consequence. Tell him all the fuss the hosp makes re: placement is a CYA, liability type thing. When V was in hosp they tried to make her have a CHEST FILM done to ensure placement, said it was their policy. I was like, we do this EVERY NIGHT at home for almost six years, shall I buy an X-ray machine?

I can assure you not just from V but from my experience with patients professionally that unless you are dealing with an unconscious, or neurologically impaired patient or an infant, an NG tube placed in the trachea is IMPOSSIBLE to miss. Nurse Dusty, do you concur?
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Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
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03-20-2014, 12:12 PM   #303
Clash
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imaboveitall, in the beginning it was reassuring like "Great, he is taking this seriously." And though I've always known he was a black and white kinda kid I honestly can't believe he is still following it to the letter. Ha! I've read all of yalls responses to him and his response has been "well I'd just feel more assured following the process for now, Mom." Umm... Okay I have a clean room process you might want to look into too, son I would hate for some of the things that are no doubt growing in your room to affect tube insertion!
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-20-2014, 01:21 PM   #304
Tesscorm
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LMAO!!!

As long as he's doing the EEN, no harm following those instructions letter by letter! I have no doubt he'll begin to relax about it all soon... after a while, S wasn't checking placement, wasn't using lubricating gel, wasn't drinking water with it, forgot guidewire a few times (which, by the way, IS noticeable when trying to insert!)... And the tape he used to hold the NG tube... he'd cut so small (maybe easier to pull off?) that it was only about 1" by 0.5" (but it held!)

Did last night go alright with the 8fr? Hope so...
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-20-2014, 03:18 PM   #305
Clash
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So it went ok with 8FR but the 6FR came in this morning. I had a rough night and took a nap, when I woke up C had replaced his tube and was checking placement. No fluid but he still hooked up and the formula started coming out his nose. He re-inserted and is hooked up now. I'm not sure why he hooked up two hours early but whatever.

He said he measured the new tube but also checked it by the old one so I hope it is not in his duodenum or something, ph was seven but he had acid reflux and heartburn earlier. I gave him pepcid.
03-20-2014, 03:47 PM   #306
imaboveitall
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He sounds like V. I wanted to give her a Rocephin shot once, (antibiotic) an old colleague of mine sent me some with a hypodermic, to avoid a dr visit. She wouldn't let me, said "it's probably illegal". My old doc pal who sent it said, "only illegal if you charged her; that'd be practicing medicine without a license". She too is a by the book type, an extreme rule follower.
Excellent that he's taking it in and out himself. Excellent.

Tape hint: there is a tape called "Coach tape" that is the only tape that doesn't irritate V's skin. Available in the bandaid section.
03-21-2014, 07:29 AM   #307
DustyKat
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I understand that is hard not to feel overawed by the whole process Clash and I too have a child that is a stickler for protocol! Well in all things medical but it doesn’t extend to things like wardrobes as that is what the floor is for, you know where I am going here!

imaboveitall is right, in a lad such as C he won’t be left guessing if the tube goes down the trachea instead of the oesophagus. Time and familiarity will ease things for C, bless him.

Dusty. xxx
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03-21-2014, 10:40 PM   #308
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An update: C felt really well today. You could tell it in his demeanor. He packed up his pump, formula and supplies and went to spend the night at a buddy's house. He was so funny, it was like a role reversal, he approached asking me as if he was preparing me for the empty nest. He really tickled me.
03-22-2014, 01:34 AM   #309
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Awww, bless him! What a fab lad you have Clash! Love it!



Dusty. xxx
03-22-2014, 07:27 AM   #310
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That's great... I'm so glad it's all starting to work - right tube, feeling better, etc.!
03-22-2014, 04:55 PM   #311
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Love it.
He was malnourished, poor boy. So many of these kids are, and it is just accepted or struggled with rather than just FEED THEM via tube.
His quick turnaround is just how V was back in the day. They need absorbable nutrition. No better way to get it than tube feeds of broken down formula.
He sounds like a well adjusted, sensible kid. I wish all the kids and parents of these underweight, undernourished children were as sensible.
03-22-2014, 05:28 PM   #312
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Ok guys, anybody got tips for this issue we keep experiencing. We have the 6FR tubes and are doing the refrigerate tip but the tubes refrigerated or not keep folding in C's nasal passage. Once they fold once they seem to never go in without folding. It is driving us bonkers and going through all out supplies.
03-22-2014, 05:32 PM   #313
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To be clear it is actually past his nasal passage. He says when he hits this spot he can feel the tube raise in his throat as it starts to coil or fold.
03-22-2014, 07:14 PM   #314
imaboveitall
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Guide wire. Is it in?
03-22-2014, 07:27 PM   #315
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The tubes we trained with nor the tubes sent to us have a guide wire.
03-22-2014, 07:43 PM   #316
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Ours is Corpak enteral feeding tube without stylet. If that tells you anything. We've got it back in the fridge but it literally coils or folds up. We've tried new tube, refrigerating, he has his chin to chest when inserting. We just don't know what else to do. We may have to switch to indwelling but the GI nurse said we'd have to change tubes once a week then.
03-22-2014, 07:52 PM   #317
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When is he swallowing in relation to the tube coiling?
03-22-2014, 07:57 PM   #318
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Hmm..He swallows at the gag reflex, he says he is not sure if it has coiled or not when he swallows the water but he said to say it coils at what he thinks is the back of the nasal package at the large opening before the throat. So frustrating because it coils so badly it actually puts a bend or dent in the tube so then it continues to coil there at that bend.
03-22-2014, 08:08 PM   #319
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I wondered if the soft palate may be the problem. It can be difficult to navigate a tube past this area.

I have mainly dealt with patients that have neurological and gag issues but when inserting a tube you can ‘feel’ when the tube has passed through the nasal passages and reaches the area you are talking about. It is at this point I tell the patient to start swallowing. This is well before the gag. Any hint of resistance I draw back and try again.

Perhaps earlier swallowing might be worth a try?
03-22-2014, 08:12 PM   #320
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Thanks Dusty, we are refrigerating again then I will tell him to try that. Fingers crossed and thanks so much for the response!
03-22-2014, 08:14 PM   #321
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And I was going to suggest he keep drinking until the tube in almost at full placement (I think that's what S did??). Also, when S first started, I held the glass of water and the straw in place, he used both hands to insert the tube and watched in the mirror. If C is not doing it this way, perhaps this will give him a bit more control to do as dusty said and draw back at any resistance.

But my offer stands, I can put the ones we hv (with guide wire) in priority post tmrw for you...
03-22-2014, 08:20 PM   #322
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When they taught him at the hospital, were there any problems inserting? Is he doing it in the same position now, ie sitting vs standing? Also, and I don't know if this helps, but as chin to chest is a 'better' position, can he try moving his neck slightly when he feels it at that spot? Maybe needs just needs to 'feel' around it???
03-22-2014, 08:33 PM   #323
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When the tube was inserted initially at the hospital C agreed to let a student nurse do it, so there were problems but it was her first time. On the last day the training nurse just guided him on how to insert he tried several times and couldn't get it but then I tried and got it the first time so that was basically it since the nurse said it would take practice.

He is using the same technique as he did in hospital but I don't think he drinks water the entire time so maybe we could try that. I hold the straw and water in place for him. Maybe having him move neck will help to. I would say yes to you mailing the tubes with guide wires but I feel certain he won't try them unless there is a nurse showing him how. It is really hard to get him to deviate from exactly what he was shown. I even mentioned trying the freezer which he wouldn't do because Dusty specifically said refrigerate.

Thanks for those tips I'm going to read them to him so maybe he will be more open.
03-22-2014, 09:14 PM   #324
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Is his ped or a walk-in clinic nearby? Would it be possible for C to stop by and have the nurse help him for the next couple of days? It seems wrong for you/C to have had so little instruction and support in starting this... When S came home from the hospital, we had a nurse come every evening to help/watch him insert the tube for a few days and then she continued coming weekly, then bi-weekly, then monthly - continued to come monthly until S finished with the EN!! After a little while, thought it was absolutely the wrong way for the medical agency to spend their money but agency could only continue to cover cost of formula as long as we had a nurse visit at least once a month.

Re sending my tubes... actually, after posting, thought our tubes might not fit/attach to the bags you use anyway??

I hope he's managed to insert the tube by now.
03-22-2014, 09:20 PM   #325
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Second that clash. We had a home health care nurse come out and help with Grace. Can you ask the GI for a referral to get one?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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03-22-2014, 09:25 PM   #326
DustyKat
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I even mentioned trying the freezer which he wouldn't do because Dusty specifically said refrigerate.
Now that is literal! C, you have to bend and be a little flexible mate. Not as much as the tube mind but just a little.

It’s a bit like Goldilocks…

Room temperature can make the tube too pliable

Freezer can make it too stiff

Fridge is just right.

Above all else…Good luck!

Dusty.
03-22-2014, 09:40 PM   #327
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So we just tried after refrigerating. It took two times but he says it is in, ph below 5 and he is hooked up to pump. So now we wait if it is folded then about 5 minutes in the pump says pump clogged downstream and then we pull out. Every time we do this, when he pulls out it is literally folded into itself. Dusty I think you are right about the palate part because the end catches there when the fold comes out his nose.

I am going to call and report all of this to the GI nurse tomorrow. I don't want this hassle to deter C from this. So far he is determined and keeps trying because he says it has to be done but I know that could waver as frustration builds plus it is a bloody form of torture in my opinion. Tonight I need the wine and some nerve pills!

He has a GP we could see if they could insert but you should hear all the freakiness I have gotten from med professional s in the area that hear he is putting it in and taking it out daily. It's like I am speaking a foreign language!
03-22-2014, 09:49 PM   #328
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Oh and Dusty, yes it was quite strange for C to say " No, I don't want to deviate from what Dusty told us." I mean I know I've put you , MLP, Tesscorm up on the CD pedestals but lordy it didn't take long at all for C to put y'all there!

I said "Well I read a nursing site that said a quick set in the freezer is what one nurse swears by." His retort, " That was one nurse, Mom not the committee, I am going with their recommendations." Ha!

Btw, Tesscorm he tried the neck move and felt that may have been what got it past.

As always, thanks guys for the invaluable support and guidance! You all make this seem so much more achievable and keep me out of the corner plucking out my eyelashes!
03-22-2014, 10:05 PM   #329
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LMAO!!! Hey, whatever it takes!!! And, can I bring that pedestal here for a bit... would love my hubby and kids to see me on it! LMAO!!! Then maybe they'd listen to me for once!!!

But, so glad it's finally worked!
03-22-2014, 10:11 PM   #330
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Haha girl I will get right on that but if it is anything like my house all the pedestals in the world won't get them listening to me around here!

Oh one more thing, the bcc spot my mom had is healing nicely and she has been given some "chemo cream" to apply, with px coverage it was still like 184.00$ a tube! But whatever it takes! She will stay on relocate because her SED rate/RA is controlled so well with it and MTX.
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