Time, Hospitals, and FODs
Time? Once you walk through the sliding glass doors into the E.R. you have exited whatever time zone you formerly occupied and have entered Hospital Time, cue music. If any hospital employee, from the care partners up through the Director of Pediatrics makes any sort of estimate that involves time- ignore the estimate. It, no matter what It may be, will happen when It happens; this is the definition of Hospital Time. Once you learn this, hospital life is a lot easier to handle.
E.R. staff have their own groove and time expectations. A kid comes in vomiting with diarrhea- give them an anti-emetic, watch them and discharge them as quickly as you can. No biggee. When it comes to FODs? Throw out all time expectations and hopes of a quick discharge. Plug up your ears when an enthusiastic Resident* unfamiliar with FODs tells you, "Oh, diarrhea is no big deal, once your child stops vomiting and eats a few Popsicle they'll be fine."
This is when having a specialist you trust is such a blessing. This is when you lean on your protocol letter. This is when you depend on what you have studied about your child's disorder. This is when you depend on your own knowledge of your own child. This is when you realize that the only meaning "time" has at this point is that you want more of it.
Both of our FOD affected boys were admitted to the hospital last week with a gastrointestinal virus. One son bounced back on D-10 plus potassium and was able to start eating and be weaned off the I.V. within 36 hours. Our other son, with the very same virus, was on D-10 for a full 6 days and required yet another 36 hours to stabilize off the I.V.
The time difference was a matter of life and death.
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*I highly recommend finding a good E.R. and a good hospital and sticking with it. We have spent every one of our 9 hospitalizations for FODs in the same E.R. and been admitted to the same children's hospital. At first we continually saw new Residents unfamiliar with FODs, but now it seems that the whole E.R. knows what to expect.
This is vitally important because it means.
- We are now whisked through triage.
- We don't have to wait till our sons are already in full blown crisis to "prove" that they need treatment.
- Our sons are given the time that they need to heal.
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6 comments:
We call our geneticist en route to the children's hospital now. I got so sick of the ER staff telling me Klaw looked "great" and dragging their butts to get is d10 hooked up. Now? We skip triage & go straight to a room within minutes of entering and d10 is being prepped before we ever get there.
It's scary when you know more about your child's disorder than the doctors you are supposed to trust in an emergency.
I can't believe there was such a huge difference in healing time for your two kids. Just really shows that no FOD is exactly the same.
Dana,
We do the same thing- call our geneticist en route. But I used to still get some polite grilling from nursing or even the residents if their blood sugar wasn't yet "critical." -Or as the case often was- their blood sugar was up because I'd been pumping glucose the entire car ride.
Though they can do a bolus immediately we still generally have to wait for D-10 to come up from the pharmacy. Sometimes that takes 30- 45minutes. Do they have that already hanging for you?
Oh my. Susan! You are doing such a good job, no wonder God has entrusted those boys to you. Hospital time is lame. LAME. I'm glad you've figured out a way to deal with the system.
The d10 has to be brought up from the pharmacy for us, too. It's usually ready pretty quickly because our doc orders it & lets the ER know it's on its way.
The last straw was when we didn't get the d10 until we were admitted & in a room. I was going nuts because it had been HOURS.
It scares me to think about what will happen if/when we have to take Klaw to an ER that is not familiar with VLCADD & we have no connections. I know I will show my tail.
Thanks for posting this. Always good to get advice on going to the ER. We haven't had to go yet (fingers crossed), but I'm sure it's coming at some point.
Do you think I should go to the nearby ER before there's any crisis, to familiarize myself and them with MCADD procedure? Or will that not make a difference in an emergency
I know some family's have done that on the FOD email group. I think they meet with the director of their E.R. You might want to search the archives- but I think the ones that did it felt that it was very constructive.
I went and talked with the station that answers ambulance calls to our neighborhood after they saved my older son's life during his first crisis.
I took my son and we went bearing donuts. The EMS guys were full of questions about FODs and very appreciative of the donuts. Turns out they had been taking a little girl with mito. frequently for several years but she had just died and they all were still upset about it- they had tons of questions about the connection between mito and FODs.
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