March 31, 2011 9:37pm

They lowered haileys vent to 11. Respiratory said he'll lower it to 10 by the morning if she does well. Then they stick at 10 and then make the time greater where the machine gives her a breath.

He said the mode she is on now is basically cpap

March 31, 2011 6:36pm

Hailey did a nif test tonight and ROCKED it! The needle was between 40 and 60 the three times she inhaled. Then she let her rest a minute and did it again and she hardly looked like she was breathing and did 20. We think she wasn't sure she was supposed to do it again

Hopefully they ignore that last reading Hailey! You ROCK girl!

March 31, 2011 12:26pm

Got my generic answer when I asked how much longer Hailey will need her breathing treatments. "she's so weak so until she gets stronger" I'm beginning to think she's going to have to be running a marathon to get out of here!

Physical therapy brought a cool looking chair (looks like a car seat). After working out her joints and muscles they moved hailey to the chair sitting on her bed. She is now sitting in it watching Tangled. Even with all the tubes and wires she looks good in that chair!

March 30, 2011 10:07pm

Jen didn't respond to my texts asking how the rest of Hailey's day/night went, so I'm just gonna post more pics :P

Hailey's Plasmapheresis machine! Looks like something you'd see next to Frankenstein! 

All those tubes and wires carry her blood from her body, clean it out, and then put it back in her body.


Some balloons and just a few of the MANY stuffed animals Hailey has gotten.

The thing that made me the "best Aunt ever"

Can't wait to hear her doing this again...

Hailey Singing "Beat It"

:)

March 30, 2011 2:22pm

Hailey is receiving her 4th Plasmapheresis treatment right now.  She has one more treatment left before the doctors "re-evaluate, and see where she's at."

She's gotten so many cards and get well notes!  The back wall of her bed is covered! We're gonna have to start hanging them from the ceiling!

Lucky girl ;)

March 30, 2011 8:46am

They figured out what the breathing thing was last night. Something about having sooo many secretions that needed to be suctioned out of her tube that it was basically echoing back in her tube and the machine was counting it as a breath. Once they suctioned her real good everything was back to "normal". So it was nothing with Haileys breathing...just from her now productive coughing! A good sign!

March 29, 2011 9:56pm

Hailey had a pretty good day today!  Her PT and OT therapists came to see her today and worked with Hailey's arms and legs.  Lots for me to update today though!

Hailey wiggles her fingers really well!  She shrugs her shoulders, and not only wiggles her toes but moves her whole foot while doing so!  I even saw her knee jump a time or two when she was wiggling those feet!  She gives a small smile and has a nice strong cough.  They are suctioning her a lot because of her cough and getting a good amount up while doing so!  She's moving her head and is wide awake and answering with a strong nod or shake of the head.

Don't get me wrong, there is still a LONG way to go.  But these are steps in the right direction!  She's making improvements!! 

She has her days and nights mixed up and they are trying to straighten that out by keeping her up for most of the day today.  Keeping the room nice and bright and interacting with her to help her sleep good tonight.

One of Hailey's preschool teachers came by to see her tonight.  When she showed up Hailey's eyes opened SO wide and her whole face lit up!  Hailey knew exactly who she was and was so happy to see her!  She brought Hailey a cute "Hershey kiss" that the kids at school made for her.  It was so nice and Hailey loved the visit.

Hailey's respiratory rate is all wacky tonight.  Her O2 sats and vitals are nice and stable, but her breathing is weird.  She's taking these short shallow breaths and the machine is counting her rate as anywhere between 70 and 108 breaths a minute.  That is setting off the alarms on the ventilator.  They took some blood to check her blood gas levels and for right now are keeping an eye on it.  I guess we'll see what her vent settings are like in the morning.  They didn't seem to concerned about it since her vitals and everything look ok.

Tomorrow is another plasmapheresis treatment. Looking forward to seeing some more movement from Hailey and more progress!  Hopefully we can get off the ventilator at some point this week and maybe even get some talk about rehabilitation placement.  Praying this respiratory rate is just a fluke and nothing to be concerned about.