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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. |

10-11-2010, 09:20 PM
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Junior Member
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Join Date: Oct 2009
Location: Minneapolis, MN
Posts: 39
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Para on the bus?
For those of you with children in school, do you have a para (aide) on the bus as well as a nurse? Our son, Jonathan, has always had a para on his bus for school (because he doesn't communicate effectively and because he has had a couple of episodes where he passed out unexpectedly) and now that he got his trach last year and a nurse goes with him to school the district is saying that the nurse is used in place of the para. Is that ok? The para helps with securing Jonathan's wheelchair in the bus and I am not sure if that is something that our home care nurses should be doing. We have an IEP meeting next week and I want to go in there prepared to ask for what I think Jonathan needs and I am not sure about this one. I know the district does not want to pay for both a nurse and a para -- I understand that. But on Jonathan's ride in the morning he does have a para already in place and the afternoon ride is the one that they are saying he doesn't need one for. I think I DO want to continue to have a para on the bus (it's always good to have an extra set of hands), I'm just not exactly sure that I can justify it. Any thoughts would be appreciated.
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Amy ~ Mom to Jonathan (2/11/97) spina bifida, shunted hydrocephalus, multiple shunt revisions, Chiari II malformation, G-tube, central and obstructive apnea, tracheotomy 8/10/09, ventilator at night and CPAP during the day, as needed. Also mom to Jonathan's twin sister, Elizabeth, and his older sister, Anne (19)
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10-11-2010, 10:10 PM
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Senior Member
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Join Date: Jan 2007
Location: Colorado
Posts: 3,982
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Is the para just for Jonathan? Usually it's a para for the entire bus, which if that's the case, then the nurse is only there for your son and if something should go awry for another child, your nurse cannot help. That is what I would be concerned with and maybe that approach may help....??
good luck...
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Dawn

former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 - 
Follow decan at: http://sleepy-dogs.blogspot.com/
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10-11-2010, 10:52 PM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,523
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We have a school appointed nurse go with Ainsley two days a week and her private duty nurse goes with her 2 days a week. She does not have an additional aide. In our case the bus driver helps secure the seat or chair. The nurse may assist but it seems to be the driver's ultimate responsibility.
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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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10-11-2010, 11:55 PM
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Senior Member
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Join Date: Jun 2004
Location: Northern Nevada
Posts: 2,764
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Nurse only for Joseph. Works out fine.
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Married to Merrill...33 years...Blessed Mom to 21 as of last count... Michael-33, Maxwell-29, Mallory-27 Justin-23, Marshal-23, Jesse-22, Jeremy-20, Micah-18, Mordachi-15, Jericho-14, LisaMarie-12, Joseph-11, McClain-9, Joey-8, MacGyver-5, Maverick, McCoy 2, his twin sister Macylea and the youngest Montana 16 months. Malachi and Jason-in Heaven watching over us all.
http://www.merrillsimonfamily.blogspot.com/
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10-12-2010, 04:47 AM
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Mentor
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Join Date: May 2003
Location: Atlanta, GA
Posts: 4,469
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Jacob just has a nurse, but if they are providing a one-on-one para for the morning ride, they can't just pull him/her off for the afternoon. Jacob's nurse helps with securing his chair, but it is the driver's responsibility. There is also an aide on the bus, but he is for all the children.
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.
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10-12-2010, 05:50 AM
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Member
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Join Date: Mar 2009
Location: Harrisburg PA
Posts: 499
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Just me and the bus driver when I take T to school. His Para is in the class waiting for us in the morning and walks us to the door in the afternoon. I assist the bus driver in hooking the wheelchair in.
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Home care LPN and Volunteer EMT. The opinions and advice I give do not represent my employers or take the place of your physicians orders.
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10-12-2010, 07:09 AM
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Senior Member
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Join Date: Jan 2009
Location: Troy, MI
Posts: 2,432
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Alexander had his nurse this summer; the little girl who rode the bus with him was in a wheel chair and had an aide of some sort (nurse? para? pca?) who was at her house when the bus arrived. The driver explained to us on the first day that it was her job to make sure everyone was buckled in safely - be it a child or adult, wheel chair, special seating, or just the bus seat.
I think it'd be hard to justify 2 people on the bus for one child; I think if the para is for the whole bus, it'd be easier to justify a nurse just for your child.
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Janet, cruncy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia
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