She Will Amaze You

When we were initially in the hospital, for Ellie’s bipap weaning, we were told she would be there for two weeks, then followed for a month or so with weekly “sleep studies” (where they send home a recording oxymetre). As you know, we were sent home after four nights, free and clear. “She’s fine!”, they said, and they even went so far as to call our nursing support to pull the plug on our hours and funding. I was peeved.

 

Fast forward to a few days of being home, off bipap, with “just one more week of nursing”. Ellie started desatting. A little the first night, a little more the next, even more the next. Finally, the nurses decided it was back to bipap time, or else spend the whole night rubbing her belly every time she tripped the alarms. When our nursing manager called, after coming back from holiday, she was in disbelief that Ellie could have been cleared so quickly. But, our lovely nurses had been calling it (on their own accord) to say that Ellie still needed bipap. She told me that we had at least two more months of nursing, which calmed my nerves a little. Then, our nursing support coordinator called, and told me she’d receirved the weird call from the hospital, saying Ellie was magically better. She told me that our funding and nursing hours are secure until our reassessment in January. That made my day.

 

We’ve been home for a couple weeks now, and for the last two nights we have been flying solo. They never staff us over long weekends. The first night, Ellie was great for a couple hours, then had a couple desats, but it wasn’t anything I couldn’t shift her position to fix. Last night SUCKED.

 

We have relisted our house on the market, and all of her equipment was packed away (except the oximeter). I fell asleep at 10pm, and DH brought Ellie upstairs at 12am. She slept fine for the first twenty minutes, and then she started desatting, over and over, and over, and over again. I was going CRAZY. I sat there looking at her, while I recorded the desats with the video function on my phone. Breathe, pause, pause, fast breathing, pause, pause, alarm, alarm, alarm, alarm. DH set up the bipap, which seemed to take forever, and finally we hooked her up. After that, her sats were perfect, she slept amazingly.  

 

Today, the hospital called asking for the BIPAP MACHINE TO BE RETURNED! Are you kidding me?! Are you seriously going to ask for it back without even ASKING if she’s okay?! No follow up to the sleep study, no follow up to anything. DH told them flat-out NO. I’ve been on the phone all afternoon trying to reach someone that knows anything at all, but the receptionist is clueless, and no one is returning my calls.

 

I am pissed.

 

In other news, Ellie is amazing. She’s now waving, signing more, all done, and pretty. She can blow you a kiss, give high fives, and clap. She loves to be sung to, she loves music, she loves to hum along. Gross motor skills are lacking, probably because of the complete absence of physio visits over the summer. Seriously, kids don’t stop needing services just because it is summer. We have an appointment next week, where I’m sure he will tell us we haven’t been doing enough. I hate the stander, it doesn’t work, it makes her cry, it hasn’t improved her standing, we need something better.

 

Blah.