5.20.15 All Worth It

I'd like to complain. 

That isn't what this blog is for? 

Oh. 

I'll attempt to tell you the facts. 

Yesterday Aimee met with her Neurodevelopmental specialist. As we had already surmised, her heart is doing well and her brain is unchanged. Meaning the increase in issues are all due to wiring problems. Unfixable and not understood. 

Aimee will be having a renal ultrasound and then we will meet with urology to learn urinary catheters. We are currently spending an hour each evening doing gravity enimas by rectal catheter. Both needs can be traced back to that ol' wiring problem. 

Last week we had the back up rate on Aimee's bipap increased to 18 breathes per minute, meaning if she isn't breathing on her own at that rate, the bipap will turn into a basic vent and use pressure to make her breath. It had been the worst week for sleep. She doesn't appreciate being breathed for and so is refusing to breath altogether. Nights were already challenging. This made them impossible. She was up, turning gray, more than a dozen times a night (twice the typical number). We would spend 10 minutes getting her oxygen back up into the 80's. 

It might be too soon to say, but the last two nights, she seems to have accepted the change finally. We are praying that this change will mean avoiding oxygen for a little bit longer. Oh, and hoping for sleep. 

The other big change discussed in this appointment was regarding school. Due to her increased dependence on the bipap and at times needing it during the day, we are being encouraged to push for home education. Having just finally settled into having Aimee ride the bus and getting a short break from caring for her on 2 mornings a week, we are struggling with this decision. What is best for Aimee is highest, but what keeps us all afloat and sane ranks pretty high too. 

-Aimee and I took a break this weekend and watched a girlie movie together. Her sweetness is beyond words. She is worth it all.-