Need a few prayers for Ally, PLEASE… She started with a goopy eye and low grade fever yesterday, but now seems to be dealing with a BIG virus (fevers up to 102, vomiting, diarrhea, thicker/creamy mucus and desats to 80s). It has hit hard and really quick, but we are managing her care and breathing treatments at home. Thank GOD and also that she has a trach. Started an antibiotic this afternoon and made vent setting changes (without doc permission, but waiting on a call back from one since 4 pm). She is doing much, much better with my “mom” changes. Borrowing a co2 detector tomorrow from a friend to make sure the small changes I did on the vent are okay, but no more low tidal volume alarms and less desats to 80s. Ally is getting closer to mid 90s for o2, heartrate is down from 160s to 130s (100-120 is her norm awake). Just need to keep up with motrin/tylenol, new antibiotic, extra pedialyte in her food, breathing treatments and PRAYERS. My little/BIG 6 year old is a fighter!
– This is only her 2nd illness since her trach (1.5 years ago), but 2nd this winter. Frustrating since we have been active with 2 days of school last week and Disney on Ice, but I have no regrets. My little girl needs to experience life and LOVES being out of our home. Things are looking more upward this evening with my changes on her vent. Just can’t wait to tell the docs that I’m in charge and I know best. They only want to do vent changes in the picu, but I did try contacting our palliative care team and I will check her co2 tomorrow.
– I did talk to pulmo and got the antibiotic, but haven’t heard back from Dr. after talking to the palliative care APN. Really, they probably won’t want to give me permission for vent changes at home, but they ARE working. I changed them a little. Rate change from 18 to 20 breaths per minute. Pressure Control and Pressure Support both changed to 18 from 17/15 and peep changed to 6 from 5. She is breathing MUCH better now and maybe the antibiotic is kicking in. DO NOT want to deal with the PICU unless absolutely necessary.
I like a phrase one of my friends used. “Sometimes its better to ask for forgiveness, instead of permission” with our medically fragile children we are taking care of at home!
Angel Ally Blog - SMA Type 1 
Prayers being sent for Ally and for all of you. Heavenly Father I ask in Jesus name that You place Your Healing Banner over sweet Ally and heal her of this virus. I ask also that you give strength to her family as they cope with this. In Christ Holy and Blessed name Amen