Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Weight percentile, being a teenager, and family stress


 
04-18-2014, 04:31 PM   #61
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Today has been a learning lesson. We were excited to get an overnight pass home for tonight. We tried to adjust times to increase the most amount of time home and I think we might have rushed things because she vomited at the last feeding. We are taking this feed slower but really hope to learn her balance quickly. When her energy level returns I want her to be able to go to school and be with friends as much as possible. 6 weeks of this schedule with the quantity of feeds is a lot of time.

The only sour note of the day came from the kitchen. Not once, but twice they sent her food! It was a cruel joke to send a kid on clear fluids only pasta or cheerios. I was a nasty mamma bear on that! Our gi was NOT pleased!

__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
04-18-2014, 05:46 PM   #62
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
There's no place like home. There's no place like home. Hang in there.
__________________
Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
04-19-2014, 07:11 AM   #63
Gmama
Senior Member
 
Join Date: Aug 2013
Location: Pennsylvania

My Support Groups:
Oh SM! I'm so sorry to hear about the c diff!! Hope you are home soon...big hugs to you and your sweet girl
__________________
Ginger
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
04-19-2014, 07:44 AM   #64
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
It was so wonderful to be home on a night pass. Started the feed at 8 and because she vomited at her second to last feed yesterday we are doing 2.5 hrs between each feed to play it safe. We are going home again tonight but the rest staying in until home care is situated. Going back and forth is tiring too. Can't wait for home care to get situated!

04-19-2014, 07:56 AM   #65
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Glad you were able to go home. Here's to better days ahead!
04-19-2014, 09:11 PM   #66
Maya142
Forum Monitor
 
Maya142's Avatar
How is D feeling? Hope today was a little better for both of you!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-20-2014, 09:44 AM   #67
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Bathroom trips aren't decreasing, just the volume is decreasing. She gained back her weight she lost since being admitted + 1 lb! so very tired... I can't wait for home care to get organized. Bad timing on a long weekend. Tuesday can't come fast enough!
04-20-2014, 12:00 PM   #68
positivemum
Senior Member
 
Join Date: Mar 2013

My Support Groups:
Hope things are improving. when my son do EN (orally) he got headaches - he felt like as he was drinking his shakes hw didn't need water so we had to up that as the shakes were 'food' not fluids
04-21-2014, 05:27 PM   #69
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
New issue today... d vomited and up came her NG tube. The one day I went to work & I wasn't there! I felt so bad. She handled it well the nurses said, but she was really scared. I didn't even know it was possible. The had to pull it back into her mouth and out her nose.

The reinserted a new tube and she is a bit sore but ok. Glad if it had to happen it happened in the hospital.

04-21-2014, 05:29 PM   #70
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Poor girl, glad things are back under control. I agree with you about happening in the hospital as well.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-21-2014, 05:34 PM   #71
Clash
Forum Monitor
 
Clash's Avatar
C had the same thing happen when he had an ng tube inserted to take in the barium stuff for an MRE. It was just the two of us in a exam room outside of the MRE room and the end came out of his mouth. It really scared him and I couldn't find a tech or nurse. I thought he would never do another one after that. A year later we started the EN with the ng tube and suprisingly he never mentioned the ng tube for barium incident.

I'm so sorry it scared her and I hope the soreness eases! These kids are such troopers!
__________________
Clash
Mom to
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
04-21-2014, 05:35 PM   #72
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Boy our kids are just amazing with how strong they are!

04-22-2014, 02:09 AM   #73
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
They surely are SupportiveMom.

It also makes me realise how much more difficult it is for most of the parents here than it is for me when having to deal with the medical side of things. Kudos to you all for your tenacity, level headedness and ability to overcome the challenges that at times seem never ending.

Dusty.
__________________
Mum of 2 kids with Crohn's.
04-22-2014, 06:21 AM   #74
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Hoping you can go home today and have the troubles behind you. You are both incredibly strong.
04-24-2014, 08:48 PM   #75
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Crap!!!! We went hone tuesday and now we are back at the hospital... poor girl vomited up her NG tube. 2nd time this happened since it was put in a week ago tuesday... ugh

04-24-2014, 10:07 PM   #76
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Oh no! Your poor girl.

Did they reposition it and send you home?

Dusty. xxx
04-24-2014, 10:55 PM   #77
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Not yet... we are still in emergency. D fell asleep on the stretcher. Me I'm a sitting zombie. Hope we can just get this thing in and go home!

04-24-2014, 11:04 PM   #78
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Ugh!

I hope you are soon seen to and sorted!

Dusty. xxx
04-25-2014, 07:20 AM   #79
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
We got to go home! After insertion, xray and consult we got home at 3:30. What a long night! We were in emergency quickly (40 mins we were in a room) but then we sat in the room for hours ( and slept a little) until at about midnight they put back in the tube and then it was waiting for consult, and x ray...

She only has 4 boxes yesterday and vomited after the 4 (about 2 hrs after the feed) so I know she is shy of calories from yesterday I just don't know what to make up if anything. Maybe I will just let her get back to the 5 and not worry for today.

04-25-2014, 07:38 AM   #80
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Poor girl. Is she afraid to learn how to insert the tube herself? I remember reading that this could happen and warning S to pull out the tube quickly if he ever felt he was going to be sick. But, I can certainly understand how it would be scary for a young girl to face inserting the tube herself. Hope it doesn't happen again.
__________________
Tess, mom to S, 22
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
04-25-2014, 08:33 AM   #81
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
She can't insert this type of tube by herself nor can I or a nurse. Only a doctor can insert it. That is ehy we have to go back to the hospital for insertion and x ray to confirm placement. I'm not sure why all this is needed. My SIL (who is a registered nurse practitioner and worked & studied in Canada but now works in Florida says even she can't do it with that type of tube.

I think the one you insert yourself is thicker tubing too but I could be wrong.


04-25-2014, 08:49 AM   #82
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I wonder why she needs this specialty tube?? Can she, at least, pull it out quickly if she feels she's going to be sick? I can imagine it is quite traumatic to have vomited the tube. (Although, I guess, you wouldn't want her to be pulling it out as soon as she feels she 'might' be sick. )
04-25-2014, 09:20 AM   #83
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
I'm not asking why on the tube at this point. I just hope she can start tolerating it. This is the 3 rd tube in 9 days.

04-25-2014, 09:31 AM   #84
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Poor girl. Hugs to you both.

Do you think a g-tube or even a j-tube would be better?
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-25-2014, 09:34 AM   #85
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
I think we might be heading in that direction farmwife. I wish she was tolerating it better. I assume the doc will tell me if we should do a g tube or j tube?

04-25-2014, 09:43 AM   #86
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I don't regret Grace having one. I wish she didn't need it but it works.
Grace had a lot of stomach involvement but tolerates her g-tube. One doc said if she keeps having issues they might add j-tube also.

Grace took about one month to heal up. Now you wouldn't even notice it's there under her shirt. We went on vacation to a water park resort and no one could tell.
The only issue for us is sand. If she plays in sand I tape a gauze over the tube to keep the sand out.
04-25-2014, 10:14 AM   #87
Clash
Forum Monitor
 
Clash's Avatar
So sorry to hear she vomited again. I know that must just add stress to the situation.

Since a doc has to place her tube and xray is used to check placement I wonder if she is not getting an NJ(naso jejunal) tube or ND(naso duodenal)tube, the NJ runs all the way into the intestines and the second while not as common runs to the start of the intestines. Both are good implementations before deciding if a more permanent tube like a Gtube or Jtube are needed.
04-25-2014, 10:25 AM   #88
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
M had to have NG tubes a few times. Every time the staff tried to give her the age appropriate size, she didn't tolerate it at all. She was nauseated and had significant discomfort. An otherwise very strong kid, would become completely worn down because it's supposed to be easy, right? When we finally pushed to have the smallest one put in and it made all the difference.
04-25-2014, 10:33 AM   #89
Clash
Forum Monitor
 
Clash's Avatar
Greypup, C was the same way. The hospital used 6FR but the dme sent 8FR and he would struggle with that size. He said it made is throat uncomfortable and he had to back down on the rate because he would get nauseated. When we got the dme to switch to 6FR it made all the difference!
04-25-2014, 11:04 AM   #90
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Clash, looking at the xray last night at 2 in the morning it was hard to tell. I couldn't tell if it was in her stomach or through her stomach into her intestines. It disnt just dangle in her stomach but went all the way across the stomach. I do know the emerg doctor said I was calling it the wrong thing (ng tube) but her discharge papers call it an ng tube so I'm sticking by that. I'm going to have to call her GI because I don't know if I'm confused, or its lack of sleep or what.

Reply

Crohn's Disease Forum » Parents of Kids with IBD » Weight percentile, being a teenager, and family stress
Thread Tools


All times are GMT -5. The time now is 07:02 PM.
Copyright 2006-2017 Crohnsforum.com