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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. |
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#1
09-15-2011, 12:56 PM
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seizure interrupts vacation
I had a pretty traumatic 'vacation' that I don't remember because I had a seizure and ended up taking an ambulance to UC Irvine.
I don't remember the fun of the first two days. The second night Dad found me seizing, unresponsive, and with my eyes fixed. I got the report from family members. Dad saw me and said, "I am trying not to freak out." Danielle's nurse, Amanda, leapt up from bed to help clear a path for the paramedics. They expertly moved me to the gurney by moving my foam pad that I was laying on so all my props were left alone. I was admitted to the adult ICU at UC Irvine. I siezed for over 12 hours and had a fever. I was sedated with propofal but ativan stopped the seizure. My incredible family, thinking of me, drove home with Mom, Danielle, and Amanda then Dad drove back down to Irvine to stay with me. Thankfully, Dad got back before I woke up. I am grateful beyond expression that everyone sacrificed to do this. I have no way to talk or call for the nurse. Not to mention I would have completely panicked. Our friend Laura and Danielle's nurses covered her. Dad was allowed to stay with me even though I was in adults. Some ignorant doctor insisted on doing a spinal tap to check for meningitis which failed because as we told him I have a fused spine. They didn't let Dad help position me so I now a very sore arm. I never got a firm diagnosis but was on 3 antibiotics. But the nurses were nice and I was beyond grateful to have Dad with me. I am home but still feel off. The biggest thing is my memory. I remember only a couple brief moments of vacation. And I have big gaps over the past month-importantc things like my brother is expecting twins. I am also having trouble retaining information. I really hope this resolves. My smarts and memory were something my body did right. To top it off my wheelchair tilt/recline broke and it takes finagling to drive. To top it all off we missed vacation  
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#2
09-16-2011, 09:58 PM
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sorry you missed your vacation due to such a traumatic event and hospital stay!! hope you are doing better!
__________________
 Mom to Caleb- born 9/7/2010 at 40 weeks, VACTERL association, thoracic insufficiency syndrome/restrictive lung disease related to scoliosis and missing/fused ribs, trach and G tube on 12/21/2010, home for the first time on 1/12/2011 , VEPTR implant 1/2012, working on being vent free
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#3
09-16-2011, 10:03 PM
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Christamae, I hope you start feeling like yourself again very soon. I am sorry about your vacation. Sending prayers you way.
__________________
 Kara. Mom to Bailey (3/14/2006), Mason Premie (09/17/2007), and Cillian - Digeorge Syndrome, Tetralogy of Fallot, ASD, VSD, Pulm artresia, non functioning pulm valve (replaced with human homograft valve 8/2011), mild tricuspid valve failure (repaired 8/2011), tracheostomy, g tube, nisson fundo, double hernia surgery, submucosal cleft palate, aortic stents, pulm hypertension, tracheobronchial malacia born 1/10/2009. Three sweet angels.
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#4
09-17-2011, 04:22 AM
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im so sorry to hear this , what a rough time you have had
__________________
  Life is not measured by the number of breaths we take, but by the moments that take our breath away. Mum to an ex 24wk prem now 4 yrs old with Chronic lung disease, chryocid web, immobile vocal cords and vision impaired from ROP. Decanned 10th March 2011  , plan to repeat LTR due to body reabsorbing graph, date unknown
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#5
09-17-2011, 07:50 AM
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So sorry to hear this! I hope you feel better very soon
__________________
Kristy Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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#6
09-19-2011, 09:26 PM
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So Sorry your vacation was cut short! What plans did you miss out on? When you were at UC Irvine you were only 20 min from us. So glad the nurses were nice.
Louise D
__________________
Mom to Aubrey 25, Alfonso 30 (Aubreys new husband), Andrew 22, Angelo 9: Trached at 8mo due to car accident. Subglottic stenosis, Paraplegic, g-tube (closed) neurogenic bladder and bowel. Decanulated 07/25/07. Re-Trached 9/26/07
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#7
09-20-2011, 12:11 AM
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BIG
's. That's not the way vacation is supposed to be!!! I'm glad you are okay. I hope the memory issues are short lived.
__________________
SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Blog Link: http://ainsleyrae.blogspot.com/ 
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#8
09-20-2011, 10:08 PM
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Oh man.
I'm sorry you've had such a hard time. I hope you're feeling like yourself again soon.
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.  Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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