Ally had a slightly better day! We still have a long way to go (to clear the junk in her lungs and upper airways and keep it gone) and also for the fevers (mostly 99-101) and fatigue to go away. Used less o2 today and some periods none at all. She was a little more alert and desats were less severe (some 50s, but mostly 70-90s if I moved fast enough) during treatments. Still a long way to go, but I’ll take any improvement we can get and still pray we can handle it at home.
Not sure exactly what is causing all of this, but using tobi nebs in case her pseudomonas is flaring up and it will also fight some other gram negative bacteria. Also using xopenex and pulmazyme and rotating tylenol and motrin every 4 hours. Might need to do an oral antibiotic too? I left a message with the pulmonologist but I didn’t hear back about anything I should be doing more. I might call again tomorrow to double check if he thinks I’m on the right route. I told them clearly that I wasn’t ready to bring her in to the hospital, although I know she should really be there in case things got worse. She’s also not stable enough to go in for tests. If we go, we will be admitted and then probably be trapped there for a week or longer. Long story about why I am trying to handle this at home (mostly emotional reasons). I might share at some point, but not sure others would “get it” or might judge my thoughts/actions. I know I am doing what is right for us at this point.
Off to do another treatment soon (every 2-4 hours). No nurse today, but RN Lucy will be here Wednesday and Thursday during the daytime. Can’t wait till we have more than 2-4 days of nursing coverage each week. Ally is approved for 14 hours a day/7 days a week and respite, but we won’t settle for crappy nursing and would rather have limited, EXCELLENT care for Ally. Maybe by August/September two of our nurses will be coming back to us and I’ll be in heaven. In the meantime, I appreciate GREATLY all that Megan and Lucy are able to do, and Maribel once in awhile.
Thank you again for the messages, prayers and well wishes (even if you haven’t written but are thinking of us). I strongly believe it helps.
A few have asked again if they can help in any way. Prayers and well wishes are MOST important. The older girls are mostly taken care off with my mom and Billy’s help (plus Melissa gets to go to Florida at the end of the week with my sister Sandi’s family). Simple meals have been a huge blessing in the past, and are always welcome since I don’t cook (and sometimes forget to eat much) during and shortly after Ally’s illnesses, but no one should ever feel obligated. I only mention it, since amazing friends ask and it does help. I pray I can return the favor or pay it all forward one day.
Thanks again for your prayers and support!!!
Tina, Ally and Krajewski Family
Angel Ally Blog - SMA Type 1 
I totally understand how you feel!! People don’t always “get” what you’re going through! I think I do for most of it!!
And we’re the same way, supposed to have 16 hours/day for nursing, 7 days/week, and we’ve had such crappy nursing that it’s never filled. We have so few nurses now, it’s pathetic!! I hope your situation improves!!