Welcome to JJ's Journey!

A day in the life of Jenna! Jenna has Spinal Muscular Atrophy (SMA) Type 1. SMA is severe neuromuscluar disorder that effects the muscles that help her move, eat, and breathe. Currently there is no treatment or cure. For more information on SMA, please visit www.fsma.org or visit www.our-sma-angels.com/jenna!

Monday, January 3, 2011

Secretions (Living w/ Spinal Muscular Atrophy)

Jenna has been dealing with quite a bit of secretions lately.  Well it has acutally been going on for a few weeks now.  She can sit up for small periods of time, but then has to get down due to choking on them.  Today during webcam school, we had to get her down, but at least she was able to finish instruction that way.  If it weren't respiratory season and she was attending school, she wouldn't be able to go b/c of them.  the afternoon is worse than the morning and the evening is worse than the afternoon.  By 8pm she is requiring suctioning every 10 minutes.  This doesn't seem like a cold, but yet it could be.  She doesn't seem sick.  At first we we were thinking it was the meds for her psuedo-obstruction as extra secretions are a big side effect.  We were able to reduce her dose from 7.5 mg to 2.5 mg without any improvement.  So it is pretty safe to say that wasn't the cause.  This afternoon was bad again... almost like the evening.  From about 3pm - 5pm I had to suction her about every 15 minutes and a few cough assist treatments in there as well.  We have pulled the cough assist out into the living room b/c we are needing it more often.  I spoke to the Lung Center this afternoon and we are going to try increasing her Robinul (med that helps control her secretions).  Hopefully that will take care of it.  It will be nice for her to get up again.


My thoughts and prayers are going out to two local families who have lost their children over the past week to SMA.   It is truly heart-breaking.  No parent should ever have to bury their child.

1 comment:

Maria B. said...

Joseph requires increased suctioning whenever he has a sore throat and is on the verge of illness. But you know, even on healthy days, we suction Joseph at least 6x an hour. We've never tried Robinul or anything to dry up his secretions; I really don't know why. I hope you figure out what's causing Jenna's increased secretions. Please hug her for us. And I'm sorry to hear about the passing of the two children in your area. That's just so sad.