dealing with iIllness,docs, nurses and DMES (Spinal Muscular Atrophy)

PLEASE big prayers for Charlie and Sophia D. They both had surgery to today for their extension surgery for their backs.
Lizzy is doing ok BUT she kept alarming ALL last night! I coughed her or suctioned her and she would go back to 98-99 o2 . Her chest sounds GREAT. Great movement. It had to be the BIPAP. She is satting great with out bipap. I am not understanding what is going on. UGH Secretions/junk are thinner. Her Bipap sounded weird(Motor) so we had to send it in to get it fixed and they got us a used one which I just totally disinfected it . They said Lizzy's bipap was not working right. That was a hassle also. You have to call this person and then call this person to see if that person got the message. New Policy changes at the DME.....
Sorry my mood sucks today. No sleep last night .
Lizzy had started green gunk yesterday and TONS of secretions. Went through sooooo much bull yesterday getting her on an antibiotic She had low grade temp and/ is a total crab.
Lizzy's local doc was gone so the Nurse Practitioner ordered Lizzy ( You are not going to believe this one...... ) Freaken Robitussin!!! ... After I waited all day for them to call back with a script for an antibiotic. That is what they called and told me. Voicing my opinion got me no where. They know what Lizzy needs and they also usually always give us what we need for Lizzy. It took till 4:20pm yesterday to get that call.
I was so upset I called up to our specialists office only to get a recording from the number I used to call to talk to the nurse and it said they are "NO LONGER TAKING PATIENT CALLS ON THIS LINE" with no details only if you want to make an appt a number to call. I call Lizzy's specialist 's asst Lisa (she is a super great person)and she gave me a number to call. The doc on call called back and he informs me Elizabeth has what ever one else has and its not from the flu shot or she would of had symptoms the next morning after the shot. He was very "Dry" but called me in the script for Lizzy with no problem. It was such a frustrating last few days I already hate the season and its just started.
Lizzy is doing better tonight but is very cranky keeps repeating herself when you do not give her what she wants right now and will no nap today even though she feels like crude.
I did leave to go to Curves today so I did escape for an hour.

I know I am rambling. I think I am taking Lizzy to bed early and call it a night.
Any way special HUGE prayers For Charlie and Sophia.
Prayers for Lizzy and MJ too!!
Gosh I love my life some days!!!!!!