Connor Update

It's been almost a month since we announced that Connor was suppose to be off the vent 24/7. Well, there is no update. UGH! Head shaking.

I knew a few months ago there was some confusion on the doctors orders. My understanding was before his July appt he was already suppose to be off his vent 24/7 and that the July appt would be a follow up how is it going. According to our nurse who wrote the orders three months previously he was suppose to be on his vent from 4 am - 8am. And that the doctor didn't write the orders to totally remove him.

Okay, well I didn't read the order so I went with what she said.

Well, this appt Jason forgot a nursing order sheet and verbally told our day nurse the instructions. Normally, this is fine. They write up the order sheet and send it into the doctor.

So, I'm asking the night nurse how he has been doing at night. There were a couple times she said he was low and put him on his vent. Didn't think much of it.

Well a couple weeks ago she tells me she is still putting Connor on the vent from 4-8am.

WTF!!!!!!!!!!!!!!!!!!!!!!!!!!!

I ask her why and she says well there was no order for it. ARE YOU KIDDING ME!!!!

So basically, Connor has only been off the vent 24/7 about three days a week. Friday morning until the night nurse comes back on Sunday night and 4am rolls around.

Well we have the orders now written and waiting to get them back to take him off the vent 24/7.

Of the time he has spent off the vent 24/7 in our care he has done well with his saturation's. But I'm a little concerned about his heart rate that we will need to discuss with the doctor.

I'm not sure if it's normal for a little kid but in a deep sleep Connor's heart rate goes into the 50's. Is that too low? It is low according to the pulse ox we use and it sets off the alarms every time I spot check him.

Have some more updates later. The girls start school on Thursday. We have not heard from the school regarding Connor so he will start the school year with home schooling.

Ciao!