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My capnograph measures my Carbon Dioxide or C02 levels through a tube hooked into my ventilator. The C02 is measured when I breathe out through my ventilator.
The normal range for C02 is 35 to 45. C02 can be very poisonous for kids with SMA so this machine helps us to know if I am reaching a dangerous level.
This capnograph also can measure my oxygen levels, my heart rate, and respiration rate

My In-Ex or Cough Assist helps me to clear mucus from my lungs. It forces air in and then pulls it back out, simulating a cough. Because SMA effects all my muscles, especially my breathing, this machine is very crucial for my health.

For additional information on the In-Ex or Cough Assist, visit: http://coughassist.respironics.com/

The top tube is my g-tube or Gastrostomy tube, goes into my stomach. I use my g-tube for air venting and medications.
The bottom tube is my j-tube or jejunostomy, goes into my Jejunum (small intestine). I use my j-tube for feedings (the Amino Acid diet).
The scar is from my Nissen surgery.

For additional information on Feeding Tubes and Nissen's, visit: My Experiences with Tubes

My feeding pump, Kangaroo PET, pushes food into my j-tube to keep me hydrated. I get 85 cc's of fluid per hour. It hangs on the back of my chair and holds my pump and bag.

For more information about the PET pump please visit Kendall Corporation

I use the Amino Acid Diet to supplement what I eat orally. I use the following over 2 days :

3 Packs of Tolerex
4 Calcium Carbonate Capsules
2 Cups Juicy Juice - variety of flavors
2 Ounces of Miracle 2000
4 ounces Gerber Apple Prune Juice
Fill bottle to 3 liters
 

I got the Volker hospital bed to help with my reflux issues. It does trendelenburg and reverse trendelenburg which is very helpful when I am sick. Unfortunately, I have had lots of problems with the head of the bed falling when I am in the upright position. It also makes terrible creaking noises when sitting up. If you decide to get this bed, I HIGHLY recommend getting the battery backup in case of a power outage.

For additional information on the Volker hospital bed, visit: http://www.nursingbeds.co.uk/adjustable-beds-hospital.htm

I LOVE my V-Cue Mattress! It can roll me from side to side, do chest PT, and vibration/massage. I currently have it set to roll me every 50 minutes at a 60 degree angle but I can change that anytime I want.

For additional information on V-Cue Mattress, visit: http://www.hill-rom.com/usa/Vcue.htm

My ventilator is called the LTV 950. It is the best ventilator I have ever used! I use it on the following settings via my trach.

SIMV, volume
15 bpm
400 ml volume
Insp. Time 1.0 sec
Pressure Control 14cmH2O
Pressure Support 30cmH2O

 For additional information on the LTV, visit: http://www.pulmonetic.com/catalog/ltv950_details.aspx

For additional on the Mirage Vista nasal mask, visit: http://tinyurl.com/kp7up

See a video of me talking after my trach surgery.

See pictures here of me using NIV
via my Mirage Vista Mask

I use the Fisher Paykel HC500 Humidification System to keep my airway moist at night. If I get too dry then it is more difficult for me to cough out my mucus.

I use heated wire tubing which helps prevent rainout
and that awful drowning feeling.

For additional on the Fisher Paykel Humidifier, visit: http://www.fphcare.com/humidification/

My nebulizer delivers medication to my lungs. When I have breathing/nebulizer treatments, I use the nebulizer in-line in my vent tubing.  I get DuoNebs, Pulmicort, Pulmozyme, and Tobi nebulizer treatments. I have tried so many different nebulizers it's almost not worth putting a picture! I currently use an air compressor for my nebulizer needs.

My Hoyer lift is used to transfer me.  It is very safe and I can use it as a swing.

For additional information on the Hoyer Lift, visit: http://tinyurl.com/gwq3u  

My power wheelchair is how I get around, since I can't walk. It has tilt, recline, elevating leg rests, and seat elevator.

For additional information on the Invacare TDX5, visit: http://tinyurl.com/rh6dc

My shower was custom made for me. We are currently looking into getting a different one, not because this one doesn't work, but something with a little more support.

This is my van that is used to take me places.  I have
been traveling to many different places throughout the
United States.  It has been a great van.  We purchased it from Rollx Vans in Minnesota and just got a new lift installed from MC Mobility in Dayton, Ohio. 

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