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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

12-02-2006, 01:37 AM
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Join Date: Mar 2005
Location: Blackwell, Oklahoma
Posts: 953
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Well, we managed to stay out of here for 2 months but now we are back. Kara has yet ANOTHER UTI but it is the other issue that is so bothersome. They thought she had a blocked bowl but they have all but ruled that out (I don't know how much I trust the results seeing that the dr and tech were arguing the whole time and were telling each other they weren't doing it right and on top fo that I could barely understand a word the dr was saying). Kara is running a fever, her heartrate is staying high, she cries 75% of the time she is awake and her o2 sat keeps bouncing from 100% to 90% and then lingering between. They have NO clue what is going on in that body of hers. Also she has gained 4lbs in the last 4 1/2 weeks (being on the keto diet, it is VERY strange to gain any weight more less that much that fast) and it is mostly on her stomach. She is having a little bit of a hard time breathing because of the stomch distention. She is asleep right now and her heartrate it is at !!!!150!!!! where it is usually in the 80's. I am hoping we figure something out today when her ped comes by to visit. We can definately use ALL the prayers we can get to ge this figured out.
Rachel
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Rachel mama to Kara Beth April 9, 2004 Laryngomalacia, High pallet, FINALLY vent free (8/05), Precious Smiley Princess who will tell you like it is!!!! & Timothy Sept 2008 Healthy as could be Also expecting again due in June 2010
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12-02-2006, 01:40 AM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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Oh Rachel, Im so sorry she is sick! HAve they ruled out any sort of mass in her stomach? Are you at Children's? We will be praying for you. Let me know if i can do anything. Hugs Deb
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Grateful thorns have roses
24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08
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12-02-2006, 01:46 AM
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Member
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Join Date: Mar 2005
Location: Blackwell, Oklahoma
Posts: 953
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Yeah, we are at Childrens. They have only did the abdominal xray and barium enema. I suppose they would see it in the xray. Her ped (which happens to be the best dr) said she will stop by tomorrow. I just emailed her a few minutes ago to update Â*her on what is going on. I feel like they are missing something and I told her that. I just wanted to get settled in before everything refroze and will talk to the dr's more tomorrow. I forgot to mention that she has been throwing up on for about a month now as many times as 2-3 times a day but has some days where she does not throw up. She threw up while she was getting fed last night (which she has never done since she got her fundo over 2 years ago). She is set up for an upper GI on Monday or Tuesday (we have had that set up for about 2 weeks now).
Rachel
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Rachel mama to Kara Beth April 9, 2004 Laryngomalacia, High pallet, FINALLY vent free (8/05), Precious Smiley Princess who will tell you like it is!!!! & Timothy Sept 2008 Healthy as could be Also expecting again due in June 2010
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12-02-2006, 01:53 AM
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Senior Member
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Join Date: Jul 2006
Location: Murrieta, CA
Posts: 3,150
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I'm so sorry that sweet Kara is in the hospital again. Hopefully the Upper GI will shed some light on what is happening. It took 5 upper GI's to diagnose Keturah's Intestinal Malrotation. Whatever it is, I hope it's not serious..........
 Sarah
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12-02-2006, 05:37 AM
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Member
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Join Date: Jun 2005
Location: Lansing, Michigan
Posts: 402
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My  are with you and that htey figure out what is wrong with little Kara. Please keep us updated as you can.
Jennifer
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I am the mom to a former 28 week monster. Elizabeth is now 2 and keeps me on my toes. We have a CTR and Decan scheduled for May 17, 2007. Now rescheduled for June 7, 2007. If they change this date one more time I swera I am going to
Mine and Elizabeth's my space page:
http://www.myspace.com/tigeress1026
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12-02-2006, 08:21 AM
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Senior Member
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Join Date: Oct 2005
Location: Wv
Posts: 1,277
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Hope sweet Kara feels better soon and gets home.
mandi
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Mandi mom to Alissa Former 24weeker born 2-25-04 trached May 04. Had Ltp 11-28-05 Now trach free.
Also mom to Makayla age 8 and summer2
www.caringbridge.org/visit/alissa
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12-02-2006, 08:40 AM
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Senior Member
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Join Date: Nov 2003
Location: Texas, US
Posts: 5,835
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I'm so sorry that Kara Beth is in the hospital. I was glad to read that your pedi is going to coe take a look. It does sound like they are missing something. Hang in there and prayers being said. 
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.
B & C are surviving triplets. Brooke survived for 1 month.
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12-02-2006, 08:46 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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Rachel
So sorry to hear that poor Kara is suffering again. You have had one awful year. It definitely sounds like they are missing something. Hope it can be resolved quickly. Sending lots of good vibes across the pond.
Julie
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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12-02-2006, 09:26 AM
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Senior Member
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Join Date: Jun 2005
Posts: 2,879
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Sounds like she needs a good GI workup! Poor little princess~ There's definitely infection somewhere.
Give big hugs from us all and smooch for her too! Get well soon girlie and tell Mommy to post when she can...

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Dawna, Mom to Tristan 6 yrs, former 22wk preemie with trach (decanned 6/20/07!!), Josh 25, Jenna 21, Gracie 14, and Jon 11.
Photography website: http://pricelessmemoriesphoto.com/
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12-02-2006, 09:46 AM
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Mentor
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Join Date: Aug 2005
Location: Canada
Posts: 4,648
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Rachel, I am really sorry to hear about your princess. I hope that you get some answers and that Kara is feeling better soon.
Love,
Tess 
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Tess-mom to Abigail 9 yrs old. DX Central Congenital Hypoventilation Syndrome and has a pace maker. Abby was decannulated April 15, 2010. She now sleeps with a V-pap machine and mask. Also mom to a fiesty red head named Olivia who is 6. I am the happiest mommy right now, all is good.
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