here are some things that jacob was able to play with and enjoyed.
a small ball (actually a cat toy) with bells in it was light enough for him to hold
lollipops and flavored chapstick (he could get to taste something- even after he was unable to eat by mouth)
links (he could hold a couple)
gymini mat (he could bat at the toys that hung from above him)
anything with lights/music
baby bach/ baby mozart videos
being read to (almost any book)
jacob got a g-tube at 5 months. initially he was fed breastmilk and then a combination of breastmilk and formula (nutramigen, as he was allergic to dairy). for a few weeks we added polycose to my breastmilk for extra calories, but them discontinued this. at first we did bolus feeds (pouring breastmilk, formula, etc. directly into the syringe that led to tube) about 4-5 oz per feeding. we would give him 2.5 oz, wait like 5-10 minutes, then give him another 2.5. we did this every four hours or so. then, we started him on continuous feeds (with a feeding pump) at night. he got 1 oz (or 30cc, or 30 ml) per hour for a total of 10-12 hours. then he got four bolus feeds of 4 oz each every three hours during the day. when the medical supply company delivered the feeding pump, it looked sooo scary and overwhelming. actually, this turned out to be the easiest of all jacob's machines to use!
we had two suction machines, one portable and one stationary. although the stationary one was supposed to be more powerful, we found that the portable was more powerful when plugged in. so, we carried the portable from room to room so that it was always close by. sometimes jacob needed to be suctioned a handful of times a day, sometimes every 5 minutes, sometimes every two minutes. we tried using tiny catheters to suction out his nasal cavities, and two types of yankauers (long, hard plastic tubes). what worked best for us was the pediatric yankauer. we were able to effectively clear jacob's airways (both oral and nasal) with this tool.
jacob began using this at night at about 6 months of age. he used a nasal canula (which i tried myself, and you can't feel the oxygen coming out at all), and we had the oxygen on anywhere from 1/4 liter to 1/2 liter. at this point, his O2 stats were usually 100 with his oxygen on (unless he was fighting pneumonia). this level decreased over time and slowly we had to start increasing his oxygen (to about 1 liter) to keep his sats up. after his 8 month birthday (when i had to revive him with cpr) he required oxygen 24 hours per day. we could take him outside without it for a little while until his last week, when he was unable to tolerate even that. we kept the O2 level at 1 liter and when his O2 stats would drop, or his color looked bad we?d increase it to 1 and a half liters for a few minutes and then bring it back down. we used a portable oxygen tank when we left the house, but in his last couple of weeks we were unable to do this because his tank only held 1 liter, and if he were to have an "episode" we needed to have a higher level of oxygen available.
jacob received xopenex (0.63mg) through a nebulizer about 3 times per day. sometimes this seemed to help and sometimes it didn't seem to make much of a difference. his nebulizer treatments were followed by cpt.
chest physiotherapy (cpt)
believe it or not, jacob loved his cpt! this involves "pounding" (for lack of a better word) on the back and chest (over the areas where the lungs are) to loosen up mucus that collects in the lungs. while a healthy person can cough to break up these secretions, jacob was too weak to do this. even though this can be done with a cupped hand, we preferred a small tool that a respiratory therapist made for us while we were in the hospital for jacob's g-tube surgery. the tool consisted of two tongue depressors and an infant ambu mask. the mask was mounted on top of the tongue depressors and taped was wound all around it, holding it in place. this concave surface created the vibrations needed to break up secretions in jacob's lungs. initially, he received cpt twice a day, for about 6-8 minutes on each side of his chest (3-4 minutes on the left rib cage, 3-4 minutes on the right) and then another 6-8 minutes on each side of his back (half on the left side of the spine, half on the right). this was increased to 4-5 minutes per quadrant (for a total of 20 minutes) at least three times a day. eventually, this became a constant thing (WAY too frequent to have timed), as it was a major source of comfort for jacob.
initially, jacob loved his bouncy seat or to be slightly inclined in his stroller. eventually, he could no longer do this and we had to find a stroller that laid totally flat. by 7-8 months, jacob was most comfortable laying flat or on his side (his side helped with the secretions). we used lots of pillows and rolled blankets behind his back to support him. he also slept this way, with one pillow along his back, and one small pillow between his knees. sometimes we put a pillow to prop one of his arms up.
we did this for about 6 weeks total (the two weeks while we were waiting for the diagnosis, and then for about a month afterwards). it didn?t help him (after all, his muscles were degenerating no matter what we did) and only seemed to tire him out even more. had jacob enjoyed this, we would have continued, but with the advice of dr. crawford and our physical therapist, we chose to stop these activities.