Ally had a WONDERFUL Day at the hospital. She is currently intubated (with a breathing tube), but it has allowed us to be SUPER aggressive and safe with her treatments to clear her lungs. Settings are super low and NO oxygen needed. We would be able to extubate soon, but have decided that we are going to trach her pro-actively to avoid so many hospitalizations. More details to come…
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Angel Ally Blog - SMA Type 1 
Oh wow!! If you have any questions, please let me know!! Also, check out http://www.tracheostomy.com/forum/index.php – it’s just for parents of kids with trachs. It’s not an easy decision, we know that. But even my husband said, he felt so much better after Kira got hers, cuz then we knew she had a definite airway.
We’re thinking of you and hope it all goes smoothly. I know you’ll be there for awhile still, I’ll see if I can come by next week to visit, if that’s OK.
I’m glad Ally is doing well . . . I’m sure you have thought long and hard about the trach and I pray for peace with your decision (and pray that I didn’t talk you into anything!). Even after we had made the decision, it was still tough going into the surgery and seeing it the first time but then we just started adjusting to our new normal. As long as you know that the first month is going to be one you have to be patient with . . . I always want a quick fix but had to learn that it took us a month to get adjusted but you will do great! If you have questions, let me know. We are newbies at it but it’s pretty fresh yet as to what we had to do to get to where we are. We do feel more confident now in our abilities to rescue Stella now that she has the trach and I wonder if we might do more this winter now that she has the trach and can hopefully fight illnesses easier. Did I tell you that I asked Stella if she liked the bipap or her trach after we did the trach and she clearly nodded at the trach . . . so that was reassuring to me.
Are they going to put in a cuffed trach and switch her to an uncuffed trach during first trach change? Our settings on the vent were slightly lower than what they were before trach (20/8 to 17/7 and 25 bpm to 22bpm) so it will be interesting to see how that all works for you guys too. Our Trilogy is on PC-AVAPS mode but some use AC which is assist control). We tried SIMV but I had heard from MJ that it doesn’t feel as natural as the other two modes. Now, the machine did alarm in the PC-AVAPS mode at first until we had to set some of the parameters higher/lower to compensate for the unnecessary alarm.
Sending you hugs and prayers for everything to go smoothly.
Love,
The Turnbulls
Hi Tina, hope u were still able to leave today. I see from the comments a lot of positives.
As far as the food I called & went right through food services. They will keep track. Tomorrow is therapy. I am gone in the morning. Hope to see an update. Keep up the good thoughts!!