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Crohn's Disease Forum » Parents of Kids with IBD » Back in Hospital (Sepsis)


 
04-18-2013, 12:51 AM   #1
vtfamily
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Back in Hospital (Sepsis)

Gus had high fever this week and ended-up in the hospital last night. Monday 101.1. Tuesday mid-day 102. Tuesday night 103.1. Went to urgent care. Started labs and sent us the the hospital. Wednesday 104.6! Yikes!!! Moved from Pediatric unit to the ICU. Three antibiotics, an anti-fungal and three liters of fluid later...has turned the corner and feeling better.

Docs are leaning toward gut bacteria in the blood stream. Now we just have to pin-point it.

Two words Crohn's parents hate: "failure to thrive" and "sepsis."

At least I'll be able to get rest (even though it will be on a hospital chair bed) tonight.
04-18-2013, 01:27 AM   #2
Niks
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Bless him!! Hope everything starts kicking in really quickly and he starts to feel much better.

(((hugs)))
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
04-18-2013, 01:28 AM   #3
Jim (POPS)
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Mt heart goes out to your child. I went septic at age 61 and it was no fun. I pray your son finds good healt soon.

Jim (Pops)
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04-18-2013, 01:36 AM   #4
upsetmom
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..I hope he gets better soon.
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Daughter dx CD March2012...
(aged 14)

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Dx Premature Ovarian Failure 2014



04-18-2013, 02:32 AM   #5
Bubbly
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Sending hugs and get well wishes x
04-18-2013, 02:35 AM   #6
Sascot
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That's so stressful! Sorry to hear you have ended up in hospital, hope things get better quickly.
04-18-2013, 05:08 AM   #7
my little penguin
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04-18-2013, 05:25 AM   #8
AZMOM
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I know you must have been terrified. Poor baby! I hope you got some rest and that this morning brings nothing but better news.

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-18-2013, 05:35 AM   #9
Mylittlesunshine
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So sorry to hear this, hope he feels better
Soon x x
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04-18-2013, 06:00 AM   #10
Johnnysmom
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All I have to say is 'Thank goodness for hospitals!' I hate being there but every time we go I am just glad I am not in this alone.

So glad he is feeling better. (((((Hugs))))) mom.
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
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04-18-2013, 06:52 AM   #11
Farmwife
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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
(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
04-18-2013, 07:14 AM   #12
Devynnsmom
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((((hugs))))) Poor kiddo! I hope he's feeling better soon.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-18-2013, 10:34 AM   #13
vtfamily
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Gus continued to do well overnight. So glad for that!!! More labs, x-rays, ultrasounds, etc... on tap for today.

Ironically, he was scheduled for a colonoscopy and endoscopy today as part of his preparation for surgery next week. Decided to cancel those yesterday because he was in such bad shape. Wonder when/if they plan to reschedule. Will have to ask the docs later.

Then there is his surgery next week. It is scheduled for Thursday. They are going to take out the stricture at his terminal ileum and re-do the duodenal bypass. I'm hoping they can move the surgery up a few days. At this point, there isn't any reason for us to have two hospital stays so close together. One longer stay would be better...well, sort of better.

Gus has been in and out of the hospital six times since January. I am soooooo ready for a break in the cycle!
04-18-2013, 02:06 PM   #14
Willowcat05
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Hope everything goes well with your son and he feels better soon.
04-18-2013, 03:13 PM   #15
CarolinAlaska
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Six times? Poor people! I hope that they can solve his sepsis and find and treat the problem and send him home healthy this time!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
04-18-2013, 04:49 PM   #16
vtfamily
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Six times? Poor people! I hope that they can solve his sepsis and find and treat the problem and send him home healthy this time!
CarolinAlaska, I appreciate the sentiment. I wish there was a way to just "fix" him too. Unfortunately he has a very resistant type of Crohn's where inflammation and strictures are a constant battle. None of the medical (drug) treatments have been able to keep a lid on the disease. If the Stelara works, we may get a break soon.
04-18-2013, 05:04 PM   #17
vtfamily
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The doctors removed the PICC line this morning. The line keeps clotting and the clots are a nice place for bacteria to grow. Results from the blood cultures are beginning to come in and they are growing "something." Once they identify exactly what "it" is, then he will get an antibiotic specific to that bacteria. Sigh...
04-18-2013, 07:24 PM   #18
ChampsMom
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Wow.. Sending prayers they have an answer soon and more prayers for you and your family...
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Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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04-18-2013, 09:36 PM   #19
my little penguin
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HUgs- hope they get the right abx soon
04-18-2013, 11:25 PM   #20
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Got my fingers crossed that things continue to improve.

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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-19-2013, 12:11 AM   #21
vtfamily
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Moved back to the Peds Unit tonight. ICU is nice and all, but... it is a relief to be considered "well enough and stable enough" to go back to a regular room. We will be here until he has three consecutive days of blood cultures that do not grow any bacteria.

Really wish I had invented that hospital chair bed topper to bring with me!!! Maybe before our next stay... LOL
04-19-2013, 02:22 AM   #22
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That's great he has been moved out of ICU, hope they find out what "it" is so they can target the right antibiotic!
04-19-2013, 02:03 PM   #23
vtfamily
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And the blood culture winner is......drum roll.....staph. Okay, so there is a much longer name but you get the idea. It's a bacteria that all of us have on our bodies and in our noses. Not a big deal, until it gets into the blood stream. Then it wreaks havoc!!!

Gus has had a few good days, so we are back in the Peds Unit. The PICC line has been removed for now. Crohn's patients are prone to clotting anyway. The blood fibrin at the end of the PICC line make a happy little place for the bacteria to hang out and multiply. The trade-off is that they had to put a line in his hand for fluids and PPN. Boy was not happy about that.

Now they will pinpoint the exact antibotic that will kill the bacteria. So, Gus will be here a few more days for that. That puts us into Monday or so. Then the docs will probably go ahead with the colonoscopy and endoscopy on Monday or Tuesday. The surgery to do a bowel resection and replace the duodenal bypass is still "on" for Thursday. All-in-all, looks like we will be here another week and a half to two weeks.

Gus is sooo tired of hospital stays. Me too, I have to admit. I really hope the surgery and Stelara will give him a period of remission. Even if it only lasts a year, or so. It would be great to get through an entire school year without having to be in the hospital!!!
04-19-2013, 02:09 PM   #24
Devynnsmom
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I'm glad you know what you are dealing with. ((((hugs))))) I'm sorry you still have a bit of a stay
04-19-2013, 02:23 PM   #25
Tesscorm
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Hugs to you both! I do hope his surgery and stelara take him into remission for a long, long time!
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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
04-20-2013, 12:41 AM   #26
DustyKat
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Whoa what a journey you are having!

Good to hear that all is stable and you have some answers. I hope the antibiotics nip it in the bud ASAP! My Sarah had a Staph sepsis too.

Good luck with the op and here's to a long and lasting remission!

Dusty. xxx
04-20-2013, 01:44 AM   #27
CarolinAlaska
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I'm glad to hear he is improving. I hope for a good long remission too.
05-01-2013, 10:33 PM   #28
vtfamily
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Day 14 in the hospital...time for an update. I'm so happy the septic shock period is over! This was the second time I've brought my son to the hospital in seriously critical condition. I hope to never do that again.

I have to say, that I am grateful for what I learned through the septic shock process. This was the first time any of my kids had a high fever but didn't look or feel sick. It's a sneaky thing, septic shock!!!

Once fully recovered from the septic shock, Gus had his colonoscopy last Tuesday. That confirmed where and how much ileum and colon were involved in the stricture. So, he had his bowel resection surgery on Thursday. The surgeon also re-did the duodenal bypass. It was a really big surgery....six hours.

He is recovering nicely, but still has a long way to go. The bile is still pooling in the stomach. It exits either via the g-tube drain or when he vomits. For the record, bile smells terrible!!! It's all I can do to not join him in those moments. Anyway, this is due to the intestines and colon not being fully "awake" yet. Until they do wake-up, no food, no liquids, not even sips of water.

Overall Gus is in good spirits. He is tired of being in the hospital, but is hopeful that when he goes home, he will feel better than he has in a long, long time. Lord, how I pray that this session brings us into a nice long remission!!!!
05-01-2013, 10:40 PM   #29
Devynnsmom
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I hope he's feeling better soon. He must be getting pretty antsy. ((hugs))
05-01-2013, 11:54 PM   #30
CarolinAlaska
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Thanks for the update. I hope Gus's system wakes up soon! I'm sorry he's had to struggle so long. I hope that it's almost over for a very long time!
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