As I mentioned previously, I use this blog for many reasons; today, I need to communicate with my caregivers. If you get something meaningful out of this so much the better.
First, you should know that my ability to breathe properly depends upon you. My muscles don't work well. The diaphragm is a major muscle necessary for breathing, and positioning and arm support is essential. The effects of gravity upon my ALS-ravaged body squeezes air from my lungs while the diaphragm struggles to lift and bring new air in. Therefore, whenever upright, my upper body and arms must be supported.
Equally important, is not expending energy and breath answering unnecessary questions or by relying on patient to provide instruction. Please learn my routine and read all care plan updates.
First, you should know that my ability to breathe properly depends upon you. My muscles don't work well. The diaphragm is a major muscle necessary for breathing, and positioning and arm support is essential. The effects of gravity upon my ALS-ravaged body squeezes air from my lungs while the diaphragm struggles to lift and bring new air in. Therefore, whenever upright, my upper body and arms must be supported.
Equally important, is not expending energy and breath answering unnecessary questions or by relying on patient to provide instruction. Please learn my routine and read all care plan updates.
- "Head down". Lean bed down until approximately 45-degrees. (DO NOT remove pillows beforehand.)
- Remove pillows supporting the arms.
- Lower bed completely, watching for signs of respiratory distress in the form of agitation, attempts at speech, audible labored breathing.
- Place legs in frog pose, holding feet underneath.
- Unfasten brief and clean peri area using baby wipes. (white package) Open labia to gently wipe clean.
- Turn patient in the following manner: Direction doesn't matter. Arm straight out 90-degrees. Other arm placed lightly upon my stomach. Ankles crossed same direction.
- Remove pillow supporting the neck.
- Immediately, roll to the side and hold lightly at 90-degrees. (Less or more forces air out rather than provides respite.)
- Clean patient as required. Apply ointment, if patient consents.
- Repeat 6 as above. Don't stop patient atop rolled up sheets, pads, slings, etc. as it is painful.
- Fasten new brief tapering around patient legs; Be mindful to not pull pubic hair and avoid "wedgies".
- Cross patient's hands on stomach (avoiding PEG tube) and slide patient up to headboard. (Achieving proper positioning is key for breathing support)
- Place neck pillow under patient's neck.
- "Head up". Raise head of bed back to 45-degrees.
- Place pillows supporting arms as follows: Use 2 pillows per side (flat on bottom, fluffy "stepped" on top). Make certain they remain level to prevent pooling edema in hands. Note: If going to sleep, use one fluffy pillow per side.
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