Jagger was ok overnight without oxygen. He was very agitated and did not sleep until 4 am but his breathing was good and his stats were normal.
We talked to the Dr. Ka (ICU doc) this morning, RSV and flu tests came back negative however he still think it was some kind of illness as Jagger got better quickly on antibiotic, steroid and IV fluid.
Dr. K (our neuro) stopped by this afternoon and he also think it was a bug and not the disease progressing in the brain stem (which is a great news!). We cannot be sure 100% without an MRI but if it was his disease he would have not gotten better on fluid and antibiotics. However as it is the cause with mito kids, Jagger will probably not get back to his pre illness (last week) baseline.
One of the bad things about the disease is that each time Jagger have a " Mito crash" such as this respiratory illness he just had, he never get back as "healthy" as he was before and end up a little weaker each time he gets sick :(
We were also warned that if we have to intubate him for any reasons( surgery, etc) it is very likely that we could not take him off the ventilator since his breathing is now weaker.
It was kind of expected news but it does reduce our options in case of major crisis.
After an exhausting 3 days in the ICU it's nice to be home!
|Sleeping in the ICU|