Larger events where his spo2 gets into the 30’s one down to 5 spo2 last night not really sure what causes it or if it’s him just locking up after his cough. 25 large events from midnight to 1000. 

I really wish he did not have someone that has not had him before and a trainee last night. Bad idea on the night he end up having more events than any other night,  or it caused more events?

Still having some bradycardia events too. But less frequent.

 For the big events he needs a bunch of stimulation to help him start breathing and heart going again, but he is able to get oxygen weaned down quickly from 100% quickly so he isn’t loosing lung recruitment each time…. I’m searching for positives.
Swapped to NIV NAVA again today to try and help him have less events because he has had so many events. Not as many as midnight to 1000
Echo cardiogram from yesterday shows nothing abnormal. PDA still closed so that’s good.

Doing blood work up, and urine sample to make sure we don’t have a new infection. talked to Dr. Changing some medications around.

He thinks the events are likely bronchial spasms because after the events he is able to come back down on oxygen percent to around 30% after requiring 100%. Can be caused by anger, pain, cough, irtitation, stimulation, and the list goes on.   

Changing the steroids he is on to a stronger one, not doing bad enough to start dexamethazone yet…  swapping to a more frequent and higher dose of levabuterol to trt and stop bronchial spasms.

Rough day,  too many events I don’t want to run through in my head again. 

One extremely large one at 2000 that took over 5 minutes to get him back up from. Extremely scary. It is scary when your child visibly change color infront of your eyes and they become non responsive to rough stimulation to try and get him to breathe and keep his heart going.  The Dr. had to come. 

 

2330, only one small poop smear today,  almost no pee. Not able to get enough for a sample.

If he has another one that bad the next step will be reintubation…

We continue to move backwards to try and move forwards.

RT you need to stop scaring us like this. 

We love you, and need you to start getting better.

To much to write today and not enough rest. 

I pray for no scary phone calls.