Articles by Brenda, my nurse
Acute Respiratory Care by: B.S. Hanson When respiratory crisis
occurs, one must be prepared in advance. One must be prepared to
enter the hospital knowing that you, as the parent will likely know
more than the medical staff and you can't be afraid to speak up and
give your opinion. Become familiar with the techniques that are
available before hand so you can offer your opinion. For example,
know what BiPAP, vest, intubation, and tracheotomy are so you know
what these options are and know what the outcomes are. |
NIV by: B.S. Hanson NIV stands for noninvasive
ventilation. It is called noninvasive because the ventilation is
accomplished with artificial airways. It is a form of care for
people with any neuromuscular disorder, including spinal muscular
atrophy. NIV involves the use of certain equipment in the daily
lives of people to help maintain energy and prevent respiratory
distress. NIV methods can be safely utilized on people of any age,
including infants. |
Aspiration by: B.S. Hanson
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Positioning by: B.S. Hanson For the children that
completly lose their swallow (majority of type 1's), laying flat and
head to the side is important to help avoid plugging episodes. When
the swallow is lost - sitting children in an upright position and
placing head in a mid-line position can add to secretions pooling in
the back of the throat. Movement is highly encouraged to develop proprioception in children. Because SMA kids (type 1 and 2) don't walk, their sense of balance is often under developed to not developed at all. The use of swings and movement by "dancing with your child" if possible and help make the ears learn the sense of balance. Standing can be done by any child (some kids will need BiPAP support) but it is essential for digestion issues and for bone growth and strength. Getting foot splints (AFO's or DAFO's) can help prevent foot drop early on and allow standing to occur. Using leg immobilizers on the knees can help stretch the knees out and prevent contractures from occurring. Standing is possible with contractures...padding needs to be added to help with the degree of the contracture. Time spent on the stomach is advised, if tolerated. It helps open up the spine and stretch the hips out. We used to do belly time and I would apply pressure to her buttocks (like I was sitting on her) and then supporting her head and neck, pull her upper body upwards by an inch or two to relieve the kyphosis pressure of the upper body. Another stretch that is benefitial is while laying on the stomach and pulling the shoulders back to help open up the chest area in the front...since most of the day is spent with the shoulders hunched forward. This can also be done on the side, doing one shoulder at a time. Stretching the shoulders and arms is often forgotten but it is beneficial. Try stretching the arms over the head. We put balloons around at all different levels so when stretching, we would hit them away. Stretching was done when all the balloons had been hit away. To stretch out the hip flexors (front of hip area), you put the child on the side of the bed and have on leg hang off the bed and down. This stretches out the front area of the hips, which will allow for better standing! Daily ROM and stretching is essential for painfree positioning later on. Try to avoid having the legs in the frog position. Using pillows and socks filled with uncooked rice will help keep the legs in alignment. Using a back brace (TLSO) can help slow down the scoliosis from occurring. It will not stop it, but will slow it down enough so surgery can occur later. Providing supportive seating and positioning to prevent deformaties from occurring. Keeping the body in alignment will slow progression of contractures from developing. Having support while in the upright position will often limit a type 2 child from some functions but will prevent rapid growth of the scoliosis curve. Proper strapping and belts are a must for the child's safety for a child of any type. Having a recline or leg elevating function on chairs is recommeded to allow for stretching and relieving pressure and having the body in a seated position for long periods of time. For children who can swallow, positioning the head midline with the chin slightly elevated will allow for a safer swallow. |
Recognizing Respiratory Infections by: B.S. Hanson
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