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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
03-25-2002, 06:31 PM
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Hi all,
I know that this is a topic which has been discussed at various time through Aaron's site, but as we're deep in (another) period of disrupted school care I thought I would raise it again. So, for those of us with school aged children, how do you manage care at school? At present Imogen has a complex arrangement involving some funding for carers from the District education office, some from the central office, and some hours from a respite care service (these are the only 4hrs a week that we can get any home-based care for, but we're using them at school - so, no rest at home). Unfortunately the total of all this still falls well short of the actual number of hours in a school week, so we have to provide care ourselves during those hours, or keep Imogen away from school. Imogen's mother and I are both trying to hold down jobs and look after three other kids, so this is quite a challenge. How do others manage? Peter 
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#2
03-25-2002, 07:30 PM
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Peter, are you in the US? I've been told that the school district HAS to provide a nurse, but maybe that varies by state, or if you are outside the US...
__________________
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 [IMG] [IMG]
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#3
03-28-2002, 07:37 AM
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I can't believe they would expect a child who may be unable to breathe due to a blocked trach to WALK TO THE NURSES OFFICE (and hope she's not out of the office!
 Amazing. While I would never wish Alli's difficulties on someone else, you have to wonder how these officials would react to these sorts of plans if it were their child in question! Deb (Alli's mom)
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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 [IMG] [IMG]
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#4
03-29-2002, 02:04 PM
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I don't know what state you are from but in Massachusetts there is a program called Kaliegh Mulligan. Does not matter your income, you may qualify for nursing for school for your child. That is the only way my daughter can go to school. Worth a try.
Dominique's mom on page 4. 
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#5
04-02-2002, 08:18 AM
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Thankfully this isn't one of the things that I need to worry about. Jimmy starts pre-school this fall and the nurse that has been with us for the past year and a half will come to the house in the morning help me get him ready then I will drop them both off at school and then pick them up later on. My son is on a vent so that does make a difference in needing someone there all the time. We live in Virginia and he is on High Tech Medicaid Waiver and they pay for the nursing.
Take care Anne, mom to Jimmy Logan (2 1.2) Guillian Barre Syndrome, trach, vent dependent, g-tube
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Anne, mom to Jimmy (9) Infantile Axonal Poly Neuropathy, trach, vent dependent, g-tube, scoliosis and spinal fusion with growth rods
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