Quick update – – As we thought might happen, Ally is getting a bit worse with her illness. Final RSV and flu have come back negative, but the pulmo decided it would be good to get a culture and see what it grows. This means, testing her snot and goobers. Childrens doesn’t do this immediately because it can easily get contaminated and grow funky things when mixed with regular respiratory flora, since Ally is not trached or intubated. We seemed to get a pretty good sample of lots of thick junk from her lungs, so we will see what it grows over the next couple of days. She is on omnicef oral antibiotic for now. Her pulmonologist stopped the Tobi nebs for now since she just finished cipro, so hopefully her psuedomonus is under control. Overall, this is possibly just a viral cold that gets very severe in an sma child.
Low grade fevers have continued even with tylenol and motrin around the clock. We have gone up to breathing treatments every 3 hours and may switch to every 2 hours soon. Ally is not needing any oxygen through her bi-pap breathing machine between treatments (and sating 92-96), but she had drops to 30s-40s out of 100 for her oxygen sats during her last treatment while using o2 and getting lots of thick secretions up. We have upped her bi-pap settings to 20-7 (baseline 18-6) on the trilogy and may switch to the Vision if needed. She cries some with treatments and when trying to cough, but is actually resting pretty well between with a decent heartrate while resting. She is still enjoying her movies on her portable DVD player.
Another big thanks to the hospital staff for all their support in helping Ally and making things go as smoothly as possible. I’m glad we came in when we did as this would be very difficult and dangerous to handle at home. It’s nice to have familar faces who know Ally and our family well and we are working well as a team to get Ally better.
Also a HUGE thank you to family and friends who have sent Ally a FREE card through Children’s website.
https://secure.childrensmemorial.org/ecard/default.aspx Thank you to the Turnbull family from IA for the beautiful Disney Princess balloon. Ally really likes looking at it and back and forth to the princesses in her movies. I will also be hanging up her cards soon to decorate her room. She is up to 20 in just 1 day, so keep them rolling in. Thank you so much.
If you’re wondering, Melissa and Kristyn are doing good with Billy and mostly Grandma Carol. They have a five day weekend due to Teacher Inservice and President’s Day. Melissa’s cold is almost over and Kristyn is doing well. Luckily Grandma Carol has recovered from her strep throat and is always a HUGE help. She is not driving in the snow though, since she is still recovering from her spinal fusion in December. Billy is still working and doing some shorter days as needed. We are sooo grateful that Service is understanding of Ally’s needs.
Off to do Ally’s treatment.
3:20 pm update — Left lung is completely down so we are now treatment every 2 hours (hour treatment, hour break) and switching to the Vision hospital bi-pap for extra pressures, still at 20/7.
Thanks for your support and prayers,
Tina, Ally and Family
Angel Ally Blog - SMA Type 1 
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