2-12-12 Ally Update – Sunday 6:30 am and 8 pm

 Well (With MY appropriate vent setting changes) Ally slept from about midnight till 5 am with NO desats or alarms. So she went 6 hours without a breathing  treatment, and I got a little sleep too.  Billy slept too, as he was helpful during the day with Ally and cleaning.  The 5 am treatment was a little rougher, starting with a small clear throw up with the 1st suction, and a few chunks of mucus, but she Ally only desated to 80s and came back up to 90s with NO oxygen needed (knock on wood and Thank God). For treatments we are IPVing with pulmazyme (or xopenex) to thin the creamy and off and on chunky secretions/mucus and also keep her lungs open. For those not in the medical world, an IPV is a fancy nebulizer type machine that sends bursts of air/nebs that kinda beats on her lungs from the inside to outside to break down the junk/mucus, while using saline or a medicated neb.  Since Ally cannot cough effectively or move, this is super important.  I then use another machine to cough and suction the mucus and secretions out, so hopefully it doesn’t become pneumonia, or completely block her airway. It all sounds crazy, but overall Ally is doing good and she was pretty HAPPY watching Jay Jay the Jet Plane during this morning’s treatment. It’s still so crazy that I have to worry about docs being mad that I changed the settings on MY daughter’s vent (breathing machine), but I want orders for when we have nurses (not till Monday and then a new one in training). The nurses will understand, and hopefully the only consequence will be is that they have to “report me” so there is no liabilty on them.  So far it all seems to be working and allowing us to treat this illness OUT of the hospital (knock on wood and Thank God again).        Thank you so much for the prayers and well wishes!!!!

8 PM Mini update — Talked to the pulmonary department at Childrens Memorial (3rd year fellow and he talked to an attending).  They understand what changes I made with Ally’s vent settings and are glad I let them know, but did not give absolute permission or get upset with me.  They did not give any orders for the changes since they want me to talk with Ally’s personal pulmo, but are hopeful that he will give her a sliding scale of settings we can use if she is sick before going to the ER.  Ally continues to do better. Her co2 numbers were awesome for the few hours I monitored her (32-38), which tells me 100% I did not put her in any danger. Treatments are only every 4-6 hours, with lots of mucus coming out, but stable between. Plan to talk to Ally’s pulmonologist (and hopefully not his APN) tomorrow morning so that we can maybe get something in writing for nurses.     Thanks again for the prayers and support.  They are working : )