This is for all of the families who have just had a child or a relative that has been diagnosed with SMA. Our hearts go out to you. Hearing that your child will most likely only live to 2 years old is the most heartbreaking thing that you will probably ever hear. I am not going to lie to you. You will have some extremely hard days ahead of you and some of the greatest! I still have days where the litlest thing makes me cry. When I hear people talk about kindergarten, high school, weddings, its hard for me because I don't know if Brynlee will get to do any of that. Then I have days where she is making me laugh my butt off all day long because she is so smart and funny. SMA life is a life of roller coaster rides, great ups bad downs. I live in constant fear every morning when I go to wake her up and I don't think that will ever go away. If anyone has any questions just let me know.
This is how our day goes.
We get up at 8am.
We do a cough assist(5 sets of 5)
pulse oximeter which checks her oxygen levels and heart rate
3 different meds VPA, Carnitor and eurythromycin
vent before the meds(burping out of her g-tube)
Make her vivonex formula for the day
feed her through her tube over an hour period
play with her and vent her a half hour later and as needed
Monday, Wednesday and Thursday we have a therapist. We have 2 Physical and 1 occupational. Lucky for us they come to our house.
put her down for a nap 2 to 3 hours after she wakes up
sleeps for a hour
cough assist again
pulse ox again
feed her every 4 hours over an hour period
so anywho I feed her again with one med
bath and change her bandage after feed
vent as needed
Play with her(Those who have a low tone baby know how hard this is!)It is so hard to find things she can do that she doesn't get bored with. Everything has to be so light and easy to push.
Nap again for about half hour(She gets tired easily)
play and read books till next feed
3 types of meds again
feed for hour
play till bedtime
night time 8pm
Start again the next morning!
I hope this helps anyone who has just been diagnosed. Its scary and believe me I could be a nurse now with everything I know about medical equiptment. You will pick it up after a couple of times, I promise. We haven't had to really deal with hospital stays other than her g-tube. We hear of people who spend months out of the year in there. We have been lucky in that regard! We do talk to the pediatrician and Abby at Dr. Swoboda's office at least once a week though.