Here is a description of everything our diva uses daily. We made this list to help people get an idea of how many things Deedee needs to live a happy life.
We use this machine twice a day (morning and before bed at night). It is the only machine that removes secretions that are deep in the lungs. It imics a cough, while exercising lung muscles. Download the Cough Assist manual.
We use this ventilator with bi-pap settings. It has internal battery that lasts 1 hour, so we use 1 3-hour external battery when we go out, and one that has 12 hours of charge in case of a blackout. Download the manual
Deirdre uses this mask almost all of the time, day or night. It is very lightweight and is very comfortable and flexible. We don't use the pads for the cheeks as they get damp with humidity and promotes acne.
Deirdre uses this mask usually at daytime. We don't use it much anymore as it is hard on the cheek sides and gives her some marks (Deedee always is positioned on one of her sides).
Deirdre uses this mask at night when she needs a break from the Swift Fx. This mask has a nice seal and is very secure.
This is a portable suction machine. Our equipment provider gives us two of these so one stays at home and the other is used when we go out. Download the manual.
We use the wand that is very slim at the end. There is another style that has a round semi ball at the end, but we find that this one do a better job when it goes to the back of the throat.
We use this catheter to do deep suction when needed and when we do the respiratory therapy twice a day. This catheter is soft and allows for suction without harming the inner part of the throat and nose. It uses a plastic Y to control the suction flow.
We use saline bullets to lubricate Deirdre's nose when doing deep suction. It is great to break down secretions and plugs. Use it regularly to keep the respiratory tract clean. It can also be used for nebulizer treatments (Deirdre is allergic to other nebulizing options so when absolutely necessary we use saline for that).
Percussion is used as part of Deirdre's daily respiratory therapy. This is done twice day, and she gets percussion on each quadrant for 15 minutes on each one.
Percussions make certain that if there is any secretion sticked inside the walls of the lungs, they will loosen up and thus be able to come out when this is combined with positioning drainage.
(OxiMaxN560 Pulse-Ox)
With this we monitor Deedee's Oxygen saturations and heart rate. Normally, Deedee has a saturation between 96-100 and a heart rate between 100-120. Download the manual.
This is a mandatory tool and must be at hand always. We use the ambu bag daily, especially during respiratory therapy. Its main purpose for us is to help clear the way if there is a mucus plug, and to help Deedee breath. In extreme cases oxigen may be attached to it to allow a slight refresh, but in our experience whenever we have to do this is while we wait for an ambulance to arrive as Deedee is not maintaining stats on her own.
Deedee does not use oxigen under normal conditions, but we always keep oxygen handy in case of an extreme emergency.
Deedee's wheelchair is a hybrid with an Orbit chair mount. It has tilt-in-space feature so we can help Deirdre in case of emergency. The vent tray is underneath, to the front of the chair. Overall it is not the best chair for her condition, the head rest is not appropriate, but it is what was given to us. We have bee fighting to get something better, and we'll keep on.
El main purpose of the stander is to strengthen the heart and promote proper circulation. Deedee uses the stander up to 55 degrees, making progress slowly but certainly. We hope she'll get to stand straight in the near future.
These hand splints help Deedee's fingers so they are well positioned so her wrists have the right support. She uses her switches better when she uses them while wearing these splints.
This splint provides support for the wrist and the finger while using switches. It also prevents hyperextension when used during the nights.
These are used to prevent the drop foot syndrome. They help Deedee to keep her feet aligned as if she were standing. They provide support to ankles and the whole foot while Deedee is in her stander, preventing her from getting bruises, lesions, broken bones or dislocations.
The knee inmobilizer is used to help Deedee keep the right position of her leg's bone alignment. It helps the knee to be firm in a right position while Deedee is in her stander, preventing her from getting bruises, lesions, broken bones or dislocations..
Deedee cannot travel being seated. She must be supine or in a stretcher. While being in a normal car, she has to be laying down for safety (preventon of chocking on her own secretions). The EZ Vest allows for that. It has a parachute tie style system that ties itself on the normal seat belts.
This power bed can go in trendelemberg, which allows for positioning body drainage while giving her percussion massages that allow a successful respiratory therapy. Secretions flow using gravity and the percussion vibrations, thus suctioning becomes very successful.
A donation from Early Intervention, the Radio-Flyer wagon allowed Deedee to be everywhere within the house, comfortably and safely. Cushions fascilitate different positioning options.
This switch activates Deedee toys that have been adapted to work with a "click". 7 grams must exert force to be activated, so Deirdre uses it sporadically (her strength has decreased and is very frustrating to use the switch and activate it successfully).
This switch allows you to feel a touch on its surface so it activates an adapted toy. Deirdre has been using the sensor with some success, but it is still difficult to control "clicks" as she sometimes does not have the strength to move her fingers.
Tobii is a eye-gaze system that allows two main functions: Comunication and Education. This computer allows Deedee to use the system and its applications via eye gaze. Through the communication screens she can talk to anyone and communicate effectively. Through the education screens she can learn and interact more efficiently.
(Kangoroo Joey Feeding Pump)
Deedee has a special diet that is fed using her G-tube (McKey button).
They have a maximum capacity of 400ml.
We have noted that the blue batches are perfect, and the violet batches always give some trouble.
Deedee follows an aminoacid diet. EleCare was prescribed by the nutritionist at the SMA Clinic in New York, and so far it has help to keep Deedee healthy and well nourished. Deedee has no other issues besides SMA and this diet has given her no side effects.
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The MicKey button allows Deedee to have less stuff on her while not feeding. It is convenient especially when we need to move or transport Deedee and when she is doing her therapies and exercises.
These sponges have toothpaste and are used to maintain oral hygiene.
Toothetes help to reach secretions that dry out behind the teeth or in the roof of the mouth. They are also useful for oral therapy.
We use IV sponges to clean up the MicKey button area and to keep that area dry. We always place one between the MicKey button and Deedee's skin.
We keep Deedee's skin free of rashes or break-outs thanks to creams based on shea butter. We use Aquaphor for the areas of the mouth and the face. Aquaphor keeps moist away while protecting her skin.
Deedee has "lazy eye syndrome", so she does not close her eyes completely while sleeping. This leads to extreme eye dryness, and that dryness leads to styes. We use this googles every night to keep eyes hydrated. When she has styes, we apply the heated gel pad it brings, and it makes them go away. This product is highly recommended! We love it!
Deedee's eyes needs constant lubrication, especially to prevent cornea damage. We use the Genteal gel for this purpose, and to hydrate eyes before putting on the night googles.
Deedee gets face rash that may be acne. We went to various doctors and had no success. By chance, we found these products from Passport to Organics. They are based on turmeric, and they have worked wonders with her face skin. We use the cleanser daily, and the cream and the serum as needed.