Some new equipment to go with descriptions below, we will organize it all on here better later.
but i checked it 18 feb 2016 and we still use all these below :-)
We have been lucky enough to have the chance to have a Philips E70 cough assist machine... it is amazing, you can see a phot of it by searching on google... but the new features such as occilation and triggering by Jessika and multiple pre-sets are amazing .. not to mention no buttons that could get moved by brushing past it like the old cough assists.. down side.. presets need to be easier to change from one to another in emergency when Jessika cannot trigger and is blocked with a mucus plug..
http://www.stellar100.com/stellar100/en/
Link to Jessika's new BiPap; the Stellar 100 , made by ResMed, the same company that makes her previous BiPap (the VPAP 3). It's not even available on Canadian markets yet (Jan 12 2012) but has already been introduced in the US and UK. we have been using it for over 6 weeks now and are very happy with the results.
Jessika's brand old Bambino medical bed, on permanent loan from our CLSC (local community service center) WAS RETURNED FOR A bigger ONE 2014.
Kangaroo Joey feeding pump, and Jessika hooked up with the feeding bag
Ambubag (altered with a one way valve in place), Eva has been using this to do breath stacking ( before we got the cough assist to simulate a cough)
New Masimo rad 8 pulse oximeter to check oxygen saturation and pulse rate (so important that if she drops below 95% oxygen in blood to go hospital) sensors are $50 each and last about a month.
LSU suction machine, using different shaped and sized catheters to extract by nose and mouth mucous and saliva. We have two of these; one will be for when we go out.
Uniden home security cam and 3.5" screen colour, night vision and sound, mounted on her crib mobile. An amazing purchase so much better than baby monitors and more secure and no interference.
In depth definitions of SMA and related equipment and cost, we shall post links here as we find them.
The wiki definition of SMA.
http://en.wikipedia.org/wiki/Spinal_muscular_atrophy
Some information about SMA
Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two, is a motor neuron disease that can affect anyone of any race, age or gender. This disease prevents the growth and development of muscles that are used every day for crawling, walking, head and neck control, swallowing and breathing. There is no known cure for this disease.
- 1 in 40 people carry the SMA gene, both parents must be carriers and they have a 25% chance of having a child born with the disease.
- 1 in 6,000 babies (21,000 yearly worldwide) is born with SMA. 50% of those diagnosed before the age of 2 will die before their second birthday.
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It is estimated that 13,000 children will die with SMA this year.
- Machines, procedures & costs
Mixed equipment not thought of before:
Maybe a Generator or some way to make power, we hear 5000w will be sufficient. (around $800)
Inverter 1000w pure sine wave (for sensitive equip like the cough assist if needed outside the home) bought 08th Feb 2011 for $180.
Clip wireless tie mic, to hear jessika well enough and for her to develop her idea of self. ( around $50) bought Jan 2001
Night vision capable camera, to keep a check on her through the night.(around $170) bought Jan 2011
Cough assist machine: To assist in a painless simulation of a cough to expell mucous and other unwanted chest/lung secretions,also to help expand the lungs, recieved 27th Jan 2011, Covered under PNAVD (home ventilation program) see below PDF for info on machine.
The bipap machine: To assist in breathing, recieved 27th Jan 2011, Covered under PNAVD (home ventilation program)
http://en.wikipedia.org/wiki/Positive_airway_pressure
G-tube: To feed direct to stomach preventing some risk of pneumonia and choking, surgery was on her birthday 28th Jan 2011, Running cost covered under medicare. http://en.wikipedia.org/wiki/Feeding_tube
Suction machine: Like at the dentist to remove unwanted saliva, we recieved 11th jan 2011 from hospital. recieved second one 27th Jan 2011, Covered under PNAVD (home ventialtion program)
Otto bock kimba stroller: Specialized, full-support, adjustable and fully reclinable "rehab" stroller for children with similar disabilities, can also be used for adapted transport in much the same way as a whellchair, once our minivan has been modified. medicare covered. received monday 15th december 2010. We will be looking into the costs of modifying the minivan, with a ramp and tie-downs, and applying for funding from the SAAQ
Support chair:received on Nov.30th 2010, medicare covered.
Oximeter: to check oxygen in body recieved 10th Feb 2011. Not covered, will get on insurance and pay the difference.
Positioning Equipment: Too varied to describe and estimate costs, but wedges to drain fluid from chest and lungs. Neck support for her to not flop her head and a car bed for travel (only viable leagal car beds will be for 35lb and 30inch children and available in April 2011 from "Snug Seat" company). Jessika is allready 27" and 17.6lb so another option needs finding soon.
Visual/sensory/play equipment: we need a lot of help with this, researching and finding things to help entertain and educated a child with muscular atrophy. here is a web site so exspensive 10x more than need be, but full of ideas even rooms full.
http://www.specialneedstoys.com/can/
We would love HELP to research: we have seen things out there like the EYE-GAZE system to aid in communication and education on computers, anyone with more info let us know since we are so busy with other things to research so much.
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CoughAssist.pdf Size : 209.454 Kb Type : pdf |
this is a PDF of fsma's cough assist definition and instructions page
Our take on the Machines and Procedures that will help Jessika with this terminal illness:
Bipap machine - this machine assists Jessika’s breathing. If she can have one in her home and start using it immediately, even though she does not need it to live, it will help exercise her pulmonary muscles and give Jessika the strength to be more capable of fighting respiratory infections later on.
Suction machine and Cough Assist – These will help with the removal of excess saliva, mucous and phlegm. The cough assist simulates a real cough that Jessika cannot do on her own to remove buildup in her lungs and throat.
G-tube - This is a surgical procedure where Jessika will have a feeding tube put directly into her stomach. It is almost certain that Jessika will lose the ability to swallow effectively so a feeding tube will be a necessity. Having a surgery that involves anesthesia is a big risk for children with SMA who have regressed to the point where they need the operation, many do not survive. It would be best for Jessika to have the G tube put in while she is still healthy, even though she doesn’t need it.
For more info see other parents sites and photos, we will provide links on the links page as and when we find them.