Fortune Rota Volvitur
[ed. note: the title is Latin for The Wheel of Fortune Turns]As I’ve posted previously, life in the NICU is a roller coaster ride.
We are no closer now to knowing what is wrong with my boy than we were nine days ago when I carried Doss out of the operating room and into the NICU.
These past nine days have been the longest of my life. It feels like nine months.
Every other day, a promise of future good news is sullied by current realities.
On more than one occasion we have heard that Doss will be coming off the ventilator soon, only to be told the next day that something was worse than thought (platelet levels, glucose levels, liver enzymes, brain bleeds, seizures, and so on, ad nauseum).
According to the NICU doctors and nurses, one day he’s fine and will be going home soon and the next day he’s gravely ill.
Today was the last straw.
Yesterday, the NICU staff said they were reducing the amount of Ativan because Doss was doing so well and his seizures appeared to be under control.
With the reduction in Ativan, they could take him off the ventilator and send him home soon.
With Doss in the NICU, I am at the hospital from 6-7am before heading off to work. P.Pie & Jorja follows up at 11, then we all go around 6 or 7 in the evening.
When I was there this morning, everything was roses.
By the time P.Pie arrived, they were saying that Doss’s brain was essentially seizing non-stop. At least, that’s what the EEG that was done two days previous was showing.
Two days previous? And it’s only now being read? We need to be in a place that can read EEGs immediately.
So we loaded up the truck and moved to Beverly. Actually it wasn’t a truck, it was an ambulance. Which I must say was a little disappointing. When they said Life Flight was doing the transport, I made certain assumptions about the mode of transport.
Perhaps they should change the name of the company to Life Ride.
And it wasn’t Beverly, it was a kid-specific hospital that has multiple neonatologists on staff as well as neurologists who can immediately read EEGs.
We are no closer now to knowing what is wrong with my boy than we were nine days ago when I carried Doss out of the operating room and into the NICU.
These past nine days have been the longest of my life. It feels like nine months.
Every other day, a promise of future good news is sullied by current realities.
On more than one occasion we have heard that Doss will be coming off the ventilator soon, only to be told the next day that something was worse than thought (platelet levels, glucose levels, liver enzymes, brain bleeds, seizures, and so on, ad nauseum).
According to the NICU doctors and nurses, one day he’s fine and will be going home soon and the next day he’s gravely ill.
Today was the last straw.
Yesterday, the NICU staff said they were reducing the amount of Ativan because Doss was doing so well and his seizures appeared to be under control.
With the reduction in Ativan, they could take him off the ventilator and send him home soon.
With Doss in the NICU, I am at the hospital from 6-7am before heading off to work. P.Pie & Jorja follows up at 11, then we all go around 6 or 7 in the evening.
When I was there this morning, everything was roses.
By the time P.Pie arrived, they were saying that Doss’s brain was essentially seizing non-stop. At least, that’s what the EEG that was done two days previous was showing.
Two days previous? And it’s only now being read? We need to be in a place that can read EEGs immediately.
So we loaded up the truck and moved to Beverly. Actually it wasn’t a truck, it was an ambulance. Which I must say was a little disappointing. When they said Life Flight was doing the transport, I made certain assumptions about the mode of transport.
Perhaps they should change the name of the company to Life Ride.
And it wasn’t Beverly, it was a kid-specific hospital that has multiple neonatologists on staff as well as neurologists who can immediately read EEGs.
Doss has an MRI, EEG, and several other three letter acronyms scheduled for tomorrow.
Wish us luck.
posted by Rob Barron at 10:21 PM
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