All of the information on this page was written by my mommy, Michelle.
Cough Assist Machine
With SMA, all soft muscles are weakened, including the lungs. Malorie’s cough is very weak, and ineffective – she has insufficient ability to clear museous and secretions – so that’s where the cough assist machine comes in. With a mask that covers her mouth and nose, and mechanical pressures of 40/40, it forces air into her lungs, and then sucks the air back out – creating a cough. This is, without doubt, the most important of Malorie’s machines – she wouldn’t be here today with out! When Malorie is sick, we use this machine as much as needed – even as often as every 2 minutes – until her airways are clear. Now that Malorie is older, she is able to cooperate with the machine – she knows that it helps her and makes her feel better – she even asks to be coughed now – and holds the mask to her face all by herself! It is also a means of chest expansion – so we often use it when she’s not sick too – to keep her chest expanding and growing. www.coughassist.com
The suction machine goes along with the cough machine. What the cough machine brings up, the suction machine brings out. It’s also very effective as a daily method for “blowing her nose” – since she doesn’t have the strength for that exercise either. Malorie has a stationary unit (Erie Medical Super Vac), as well as a portable unit (DevilBiss).
Malorie wears the pulse oximeter when she sleeps and whenever she is sick. It continuously monitors her blood oxygen saturation levels and her heart rate. When she’s awake, and healthy, her O2 levels are generally around 98-100%. And, as long as she’s above 94% when she is sick – we’re doing well. If she were to go below 94%, that would mean that she needs to clear her airways (i.e. cough/suction). Another benefit of monitoring her vitals each night is that we can see when she’s starting to get sick – her heart rate starts to increase. Finding out about impending sicknesses is imperative – we can start the antibiotics and dive right into our “sick protocol”. Malorie uses the Nellcor 290.
Malorie switched from bi-pap to the LTV 1150 ventilator in August 2008 - per Dr. Bach's suggestion. She uses the ventilator non-invasively - meaning she simply uses the vent via a nasal mask - not via a trach or anything internal. Malorie uses the Fisher-Paykel petite nasal mask (#406). Malorie sleeps with the vent overnight - and during naps, if she takes them. While the vent is at work, we know Malorie's lung muscles are being exercised - and that she is also being given a rest - enabling her to breathe more efficiently on her own when she is off the machine. It gives Malorie more energy during the days as well - she's not working so hard to breathe while sleeping - saving her energy!
Malorie uses the nebulizer when she’s sick. She takes Pulmicort, Pulmozyme, and Xopenex treatments with the nebulizer – they open her lungs and thin secretions when she has a cold – making it easier to clear the lungs w/the cough machine & suction machine – making it easier for her to breathe.
The Vest system uses a technology called high-frequency chest wall oscillation (HFCWO). The system has an inflatable vest connected by tubes to a generator. During therapy, the vest inflates and deflates rapidly, applying gentle pressure to Malorie’s chest wall. This works to loosen and thin mucus and to move it toward the larger airways, where it can be cleared by coughing and suctioning. www.thevest.com
Malorie’s daddy built this wedge for her after her first PICU hospitalization in April 2004. It allows her to lay with her head tilted down for chest percussion and nebulizer treatments – helping with drainage and opening of her lungs.
Malorie had a g-tube placed on March 15, 2007. She feeds overnight continuously via a feeding pump – EnteraLite Infinity pump. If anyone is interested in the list of ingredients in Malorie’s 24-hour feeding mixture – feel free to ask!
Malorie has a Rifton Blue Wave Toileting System. It can be mounted to a standard toilet, or as a complete toileting system for use as a freestanding commode, over-the-toilet commode, a rolling shower chair, and mounted toilet seat. http://adaptivemall.com/smcoblwatosy.html
Malorie cannot sit up unassisted, and especially not in a slippery bathtub – so we use the Leckey Advance Bath System (size 2). The seat can fully recline, as well as sit up straight for her to play – and it has lateral supports to keep her straight. We even have to take this with us when we travel – or else she cannot take a bath – not a light traveling family! The system includes a shower trolley – to hold the bath seat higher for when Malorie takes a shower vs. a bath. http://adaptivemall.com/lecbatchair.html
Malorie loves to swim – and, best of all, she’s free when she swims – thanks to her neck floatie! The float keeps her head above water – while allowing the rest of her body to be free in the water. If you saw her swimming with her neck floatie on – you’d never know anything was wrong with her – she’s a fish! Malorie currently uses the medium size float (40-50lbs) www.danmarproducts.com
Malorie rides a bike! She got it in the summer of 2005. It is a Freedom Concepts Discovery Series (DCP 12 mini) – pink, of course! Now she can ride a bike just like all the other kids! It has a chest harness and feet straps to keep her secure. It has a handle on the back for pushing – and when pushed, the pedals go around – making Malorie feel as if she’s doing all of the pedaling herself! She’s so proud of her new bike!http://freedomconcepts.com/products/discovery/dcp12mini.html
Floor sitter w/tray
Malorie has a Special Tomato floor sitter and wedge system – with tray. This chair allows Malorie to play on the floor at the same level as her peers. It has the ability to tilt, as Malorie’s strength changes throughout the day. It also has the lateral support that she needs to sit up straight. And, of course, it’s purple (size 2)! http://adaptivemall.com/sosiwitiweki2.html
Malorie just received her new Otto Bock Kimba stroller wheelchair in December 2005. She previously used a Convaid Cruiser stroller that she received just after she was diagnosed. However, the Cruiser stroller was a “one-size-fits-all” wheelchair – no tilt, no recline, no support – which was fine back then – but now Malorie’s body has changed and she needs all the support that she can get. The Kimba stroller offers just that – it’s a custom seating system – which means our seating company measured Malorie and customized the seating system just for her. It does offer both tilt & recline. It even has a little basket – just like baby strollers – very handy for Mom!! The good thing about this stroller is that it collapses just like a baby stroller – other stroller wheelchairs require that you take the seating system off first, then collapse the base – way too much work for a quick trip out – which is why we have this stroller wheelchair. If I wanted to take something extremely heavy and cumbersome – I’d just take “Big Purple”! J http://www.ottobock.com/cps/rde/xchg/ob_com_en/hs.xsl/1386.html
Malorie moved into her 2nd chair in September 2008 - it's a Quantum 6000 (Q6000). Malorie thinks the best feature is that it has capability of going 8 MPH! The seating in the chair, of course, has been custom built for Malorie - lots of padding too! The chair has power elevator, power recline, power tilt, & power leg elevators - all controllable by Malorie's own joystick. This chair is BIG! The chair - with Malorie in it - weighs 450lbs!!! We have the Stealth head support system on this chair - swing away head control arms for holding her head up when she's tired, or when she's going FAST! This chair is center-wheel drive - which we're finding to not like as much as the front wheel drive of her last chair - but, oh well - it's here to stay!