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Amanda’s Equipment

Amanda needs various machines daily that have helped to keep her relatively healthy:

BiPAP (Bi-level Positive Air Pressure): Amanda uses BiPAP while she sleeps at night and naps.  The reason for using it while she sleeps is that during sleep the body is relaxed and her breathing muscles might not work like they usually do and her oxygen levels could drop.  As she grows and becomes weaker she might need it more and she could even need it 24/7.  This machine allows Amanda to breathe without so much effort (the muscles used to breathe-intercostal muscles-are very weak in SMA and she breathes with her diaphragm which tires her).  The BiPAP consists of a machine with a corrugated tube that ends up in a plastic mask that goes to her face and is secured around the head with a cotton headgear.  She started using BiPAP at 4 months and even though it looks uncomfortable she likes it as it helps her breathe easier.

BiPAP Humidifier: The humidifier connects to the BiPAP so that the air that Amanda breathes is warmer and does not dry her or thicken her secretions.

Cough Assist: Amanda uses this machine daily during her respiratory therapy 3 times a day and if it is needed throughout the day.  Amanda does not have the strength to effectively cough on her own, and so everyday secretions get stuck in her throat blocking her airway and leaving her unable to breathe.  The Cough Assist consists of a machine with a corrugated tube that ends up in a mask that covers Amanda’s nose and mouth.  The Cough Assist delivers air into her lungs and then pulls it out forcing her to cough.  Amanda definitely does not like the Cough Assist.

Suction: Amanda is unable to swallow and in order to get rid of her secretions she needs to be constantly suctioned.  If she isn’t her secretions could choke her or end up in her lung causing aspiration pneumonia.  This machine is a very noisy one and has a tube connected to a suction catheter that goes into her mouth and throat and a nasal tip to suction her nose.  Amanda is learning to not hate this machine much as she has realized that it allows her to be more comfortable.

Pulse Oximeter: This machine measures Amanda’s oxygen saturation levels and her heart rate.  She wears an infrared sensor around her toe or finger that attaches to the machine.  She has this at all times except during bath time to warn us if something is wrong.  It gives us peace of mind as we can constantly look at the numbers and see how she is doing, however, over time we have learned that looking at her signs is actually more effective and faster than the machine.

Feeding Pump: Amanda is fed through this machine directly into her stomach’s G-Tube.  This machine allows us to program how much and how fast food goes into her.  This is a small machine that we attach to a pole; a feeding bag hangs above the machine and a tubing goes from the bag into the machine and out where it connects to Amanda’s button in her stomach.  It has a battery and a carrying backpack so if we go out she can be fed.

Nebulizer: We use this machine to deliver medicines in a mist into Amanda’s lungs.  We use it during her respiratory therapy 3 times a day.  It is a bit noisy and it can be administered directly into her BiPAP tubing or through a mask.

Oxygen Tank: Amanda is not constantly on oxygen, but when she has had respiratory distress oxygen has really helped her to stabilize.  We can deliver the oxygen directly into her nostrils but the best way is to connect it to her BiPAP.

Ambu Bag: This is a handheld device to provide ventilation to a patient that is not breathing.  Oxygen can be attached to it.  We have used this a couple of times when Amanda’s oxygen levels have dropped too much and she has turned blue and lost consciousness.  For her, this has been the most effective way to help her clear her secretions and breathe again.


BiPAP, Pulse Oximeter and Humidifier

O2 tank to the left, Cough Assist and Ambu Bag behind it

Portable Suction Machine

Feeding Pump


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