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04-16-2013, 10:05 AM   #31
Farmwife
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We'll be praying for her.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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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
04-16-2013, 12:06 PM   #32
CarolinAlaska
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Praying here too. You keep cool, MLS. Praying for lots of grace, peace and health for both of you during this rocky time.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
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04-18-2013, 10:07 AM   #33
EthanClark
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Clark had his sugery Tuesday and we were able to come home from the hospital yesterday. Everything went very well. He was so brave it brought tears to my eyes. We were able to walk him to the operating room but had to stay outside the door, we kissed him and set him down he walked bravely into the room and the doctor put him up on the bed. He laid down and put his own mask on. Didn't even look at us again. He was in some pain when he woke so they gave him a pain med and zofran for nausea. His pain was managed by tylenol after that. he took a little while to talk to us after but then returned to his happy self. We were taught very well at the hospital on how to care for the peg tube. We have our emergency kit with us and pray we won't need it. We will go back in at 8 weeks to get the MIC-KEY button placed. So far so good. The experience was alot better and easier than I had anticipated. I hope it goes as well for others. Good Luck
04-18-2013, 12:12 PM   #34
CarolinAlaska
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I'm so glad to read that it went so well! What is in the emergency kit and what is it for?
04-18-2013, 12:59 PM   #35
EthanClark
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The emergency kit is just in case the tube gets pulled out. They have everything you will need to place a foley catheter to keep the hole form closing up before you get back into the doctor. We were told to take ours everywhere we go. Even if is to run to the gas station.
04-18-2013, 01:57 PM   #36
Mylittlesunshine
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Hi Ethan Clark
Glad the surgery went well
Lucy had her mickey fitted on Tuesday
Evening the they fitted both the tube and
Mickey at same time for Lucy x
Hopefully Lucy will be home in day or so.
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04-18-2013, 02:05 PM   #37
EthanClark
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MLS-I wish Lucy a speedy recovery
04-18-2013, 02:09 PM   #38
Mylittlesunshine
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Thanks Hun same to Ethan.
How did you find the whole procedure?
Did how you finding the feeding
Now ur home?
Will u have a nurse from community come out
To your home? That's what our hospital
Arranges.
04-18-2013, 03:10 PM   #39
CarolinAlaska
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How did Lucy's procedure go? Is she having any pain? How about Ethan?
04-18-2013, 05:28 PM   #40
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So good to hear both surgeries went well.

How long did your stay take?
We're they able to take the same amount of formula per hour?
04-19-2013, 05:43 AM   #41
Mylittlesunshine
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Carolin it went well thanks
The fitted tube and mickey at same time
It save less stress of coming back for Lucy
Emotionally which I think is better.
As for pain when she first came back she was
In some pain but pain med did the trick
The next day she was up playing.
04-19-2013, 05:47 AM   #42
Mylittlesunshine
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Farmwife Lucy is still in as
They want to increase her formula
As she is still very under weight.
Hoping to be home may Saturday or Sunday.
Usually your home quick depends on
Child, the nurse said usually ur in 24- 48hrs
Depending on each child.
Have you decided if grace will have a mickey done?
04-19-2013, 04:30 PM   #43
Farmwife
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Yes MLS,
We just got back and on the 30th will be her surgery for a mickey button.
Their hoping as am I that she will be in and out within 24-48 hrs.
My ONLY (ya right ) concern is the fact that Grace's GI track does not move fast.

Will they demand that she have a bowel movement first before leaving the hospital?
04-21-2013, 03:58 AM   #44
CarolinAlaska
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good question, they often do...
04-23-2013, 11:52 AM   #45
EthanClark
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Hello All- Sorry I haven't gotten back sooner, I took some time off work to stay home with Clark for recovery. I felt the procedure went very well. The childrens hospital we go to is absolutely the best hospital ever and Clark was taken care of so well. The feeding went well, they started out at a low dose and were able to up it to 100ml per hour by the middle of the night. We were offered a nurse to come out but because we had already been doing the feedings through NG at home we decided that we didn't need one. We only had to stay 24 hours because Clark was doing so well. Clark also wasn't required to have a BM before we left. I am sure that if differs with every hospital. While the process and pain was better than expected it has been really hard to clean the stoma at least two times a day. While the process and teaching was easy enough Clark is really scared and screams, cries and fights everytime we have to change and clean the dressing. He isn't in any pain and all of his symptoms have completely went away again which is so great but I do think that he is having some psychological issues with everything. He is so emotional about everything. Poor little guy. I am hoping with time it improves or I will contact the hospitals social services to get him some therapy to help him deal with everything.
04-27-2013, 01:52 AM   #46
CarolinAlaska
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Sorry I haven't been around in a few days. I'm sorry too that Ethan is taking his new stoma so hard. It must be hard on the little guy to understand why this was done to him. My 13 yo understands it, but she is frightened of any surgery too. I hope he gets used to it quickly!
04-27-2013, 04:00 PM   #47
Mylittlesunshine
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Lucy is the same she is not liking it at all
She doesn't like new things and change
When she see's it she tells me to take it off.
I'm trying to get her a tuby bear made
It see if it helps her.
04-27-2013, 09:01 PM   #48
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Well Grace will be getting her g-tube on the 30th. I also wonder how she'll take it.
I know it freak her out if I tried to take her tape off her face.

I can't wait to get this done. She's naturally weening off drinking her formula. With no n-g tube it's me spending most of the day telling her to drink.

Any advice on what it's like or advice you wish you were given about the g-tube and or care of the site.
04-28-2013, 03:59 AM   #49
CarolinAlaska
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For a little humor, I'm posting this art that Jaedyn is working on: a castle with a working drawbridge (has a lever pulley system) made of her Ensure cans!

04-29-2013, 10:30 AM   #50
EthanClark
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Our hospital was wonderful with explaining everything. I had to read through a packet and watch a movie before I met with the nurse to go over how to care for the site so I already knew all the information. It is pretty easy to remember too. Clark just gets scared when I clean it. I am excited that at the 2 week mark(which is tomorrow) he can shower and we only have to clean it every other day. It will make it alot easier. Clark isn't scared about having the tube, he was a littel shy about it at first and didn't want to show family but now he shows everyone. I would talk to family about how to react though so they don't say anything that will hurt their feelings. My 7 year old nephew saw it and his mom said "oh look Clark is showing you his tube doesn't it look good" my nephew got a horrified look on his face and said "No, that looks horrible" He was just being honest and luckily it didn't even bother Clark but some kids might be hurt by that. I am excited about getting to have the MIC-KEY button put in at week 8 as the tube is very bulky. I am not sure why some doctors do the tube first and others just insert the button but it will be nice to do the switch. Give Grace a hug for me. I hope it goes well and if you have any other questions just let me know. Good Luck
04-29-2013, 04:05 PM   #51
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Hi, all,
I'm not young but have had crohns since young. I too have a PEG and after 9 years I have to say it drives me insane. It does the same for my dietician who has to change it regularly. Yes, its got crohns in the tract!!! its painful. My poor dietician needs to play tug of war with taking it out. it now takes around 20 minutes to change instead of 2 mins initially. it also got a bug in it from the outset, and I was so doubled over. It even took 18 months to settle down. I sincerely hope that you newbies to the PEG have no issues. I think children take things better and heal better anyhow.

I'd have stuck to naso gastric tube if I had know the pain. Please look after the kiddies with PEG tubes.

good luck.
05-01-2013, 09:23 AM   #52
EthanClark
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We hit the 2 week post op mark yesterday and letting Clark shower was great. I did notice some granulation tissue that has me freaked out so I am calling the doctors office as soon as they open. Other than that things are greatly improving, even the cleanings are going better. If anyone else has information on how granulation tissue was treated please let me know. to all!!!
05-02-2013, 12:51 AM   #53
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Hello everyone,

I'm happy to finally have a few minutes to check-in and see how things are going for all of you.

My son (Gus) was dx with Crohn's when he was 6 yrs old, he is 13 yrs old now. We've been through the "staircase" of Crohn's meds. But all they were able to do was control his pain and his disease to a degree.

He never had an NG tube or a PEG, but he has had a G-tube (Mic-Key button) and/or G-J tube since Jan. 2012. The G and the GJ tubes have been effective in helping Gus gain weight at a steady rate. We use an elemental (amino acid) formula called ElleCare. We run the feed over night. He goes through his day as usual, including meals. He likes the tube for a few reasons. 1) he gets the nutrition and calories, even when he doesn't feel like eating. 2) liquid medicines can be administered there, so he doesn't have to taste them. 3) contrast for CT's and MRI's can be administered there too! He was never able to drink the contrast for full effectiveness of the tests.

In Feb. 2013 we added a PICC line for TPN nutrition. His strictures became so severe, that we needed to bypass the digestive tract completely (we put the formula infusions on hold). The TPN has been excellent for weight gain, energy and pain reduction.

I never felt any trepidation regarding the G or GJ tubes. They were placed via outpatient surgery and he was fine within a few hours. Operation, care and maintenance has been very simple.

The PICC line (Peripherally Inserted Central Catheter) was a little more scary. Anything that is placed so close to your child's heart is scary! I had a hands-on lesson that lasted 4 hours before we left the hospital. The first couple of days were a little shaky, but then I was able to find a rhythm with it. We run it overnight, same as we did the formula, so he can go about his day unfettered.

Gus was even able to ski four days over spring break with both the G-J tube in AND the PICC line in. We took all of the supplies with us...including the "emergency kit" for the GJ-tube and a complete dressing change kit for the PICC line. We didn't need any of it and he had an amazing time!!

Two and a half months into using the PICC line we hit a very serious bump. I was always able to infuse the TPN into his line. We discovered that Gus was prone to "clotting," meaning we could not draw blood back out of the line. Declotting is not a big deal, if you are at a clinic that is prepared for that process. Our GI and hospital are located about 2 hours from our house. We discovered that our local clinic is not equipped to unclot PICC lines. This is where it gets dicey...

Even though we could work around not being able to draw blood through the PICC line by doing regular arm draws, there were hidden dangers in leaving the clots. The small clots became a haven for bacteria and Gus ended-up with a bacterial infection. Actually, he went into septic shock. We are fortunate to have a wonderful medical team. He got the care he needed quickly and came out of it fine.

We will be working with our local clinic to help them establish better PICC line procedures for pediatric patients. TPN is a very effective form of providing nutrition and isn't difficult to administer, but it is important to know the risks and dangers and take all of the necessary precautions. I have one friend with Crohn's who (successfully) had a PICC line in place for eight years!

Gus has just had surgery to remove the stricture. With any luck, he will be able to eat like a regular AND absorb the nutrients normally...no PICC line, no G-tube feeds! Time will tell.

I look forward to exchanging information with you as time goes on.
05-02-2013, 11:24 PM   #54
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Thanks for the update, VTF. Sorry I don't know much about granulation tissue in Gtube lines, but I do know that they recommend not using hydrogen peroxide to healing open wounds because it breaks down granulation tissue... Let us know what your doctor's office says. You can also talk with a nurse at your surgeon's office or in a wound clinic for advice. Can you show us a pic of what you are seeing?
05-03-2013, 09:41 AM   #55
EthanClark
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Carolina-The doctor office presribed him some steriod/antibiotic cream to use for a few days. Hopefully we caught it early enough so that we don't have to use silver nitrate to burn it off. I have read some pretty bad cases where the poor kids are in a lot of pain afterwards. I did also read that tee tree oil has been used by some as well. I will try that before I let the doctors burn it. Clark is alread so scared I really don't want to traumatize him more. Because the tissue is under neath a plastic disk I can't get a picture of it. It is raised, red bumpy tissue. he has no signs of infection so that is a good thing. Crossing our fingers that this works.
05-03-2013, 10:38 AM   #56
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Hi all.
Grace had her g-tube put in on Tuesday this week. We got home on Thursday.
She 's doing great. She walks bent over like a 90 year old woman but she always has a smile on her face. We ended up staying longer than I wanted because her pain was bad. Her Surgeon put two visible stitches OVER her button to secure it for 2 days. When her took the stitches out on Thursday she was a different kid.

The hospital staff was GREAT. We didn't have a bad or rude nurse and every one that works there was always asking us if we needed anything.

Her feeds are still on the low side. We hope to work up to 120ml an hour soon. One step at a time.

Her home health care nurse came out this morning and she says everything looks great. I pray it continues this way.
05-03-2013, 11:03 AM   #57
EthanClark
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Farmwife- I am so glad to hear that Grace's expreience was a good one. I have been wondering how she was doing. We have Clark's feeds at 120ml an hour right now. I may up it a little more in the next few days. He is doing great besides the cleanings and granulation tissue. i hope things will continue smoothly with Grace too
05-03-2013, 12:42 PM   #58
Mylittlesunshine
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Hi all glad everyone is doing good
Lucy is also on 120ml an hour
The cleaning is much easier although
She is still upset seeing her mickey
I think it scares her but she is much better
Than she was.
I'm so happy I made this decision to put
The mickey in as it is much easier than the
NG tube. Love to u all
05-03-2013, 12:43 PM   #59
Mylittlesunshine
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How many feeds are your littleones
Having?
05-03-2013, 01:49 PM   #60
EthanClark
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MLS-Clark does 1250ml over night. We do 1 feed but I start with 3 cans and when that runs out I flush the tube and do the remiaing 2. I really want to see if I can up the feed time so that I won't have to wake up every night to do the switch. I just raised it to 120ml without any issues. I haven't slept through the night in a year and a half Sleep deprived and crazy
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